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Marie C (MarieConleyHbg), Pituitary/ BLA Bio

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Marie Conley is a consultant focusing on engagement and stakeholder strategies and fund development for a variety of clients through her company Conley Consulting, LLC.

During her tenure in politics (1994-2009), Marie was a trusted advisor to top-level government officials and private sector organizations beginning in 1994 as the scheduler to Governor Tom Ridge. In 2009, as a senior level fundraiser, strategist and event planner, she made a successful transition from Pennsylvania’s highly competitive political landscape into the equally challenging field of non-profit development as director of Penn State Hershey’s Children’s Miracle Network. In 2012, her focus was working with Sue Paterno, wife the late Coach Joe Paterno, to assist with a number of initiatives around the issue of prevention and awareness of child sexual victimization focused in the arena of higher education. Marie continues with the national experts Stop It Now! on its Circle of Safety for Higher Education. ™

Marie never takes any professional or personal task at face value. She is always looking for ways to improve efficiencies, outcomes and most importantly calls upon herself and those around her to do the right thing for the right reasons. Her accomplishments in such a short period of time at Children’s Miracle Network are only one example.

Marie was unanimously granted Governor Emerita status by the Pennsylvania State System of Higher Education for her more than 13 years of service. Until she submitted her resignation in May 2016, Marie served as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education and was Chair of the Academic and Student Affairs Committee. She spearheaded significant changes in policy regarding the recruitment and hiring practices for university presidential and chancellor searches and has re-evaluated and changed the policy for university presidential evaluations. Marie was first nominated in 2002 and was re-appointed by Governor Ed Rendell in 2004 and re-appointed by Governor Tom Corbett in 2012. From 1997 to 2011, Marie served as a Council of Trustee for her alma mater, Bloomsburg University of Pennsylvania. She played a critical role on the Board of Lincoln’s Footsteps commemorating the 150th anniversary of the Lincoln’s Gettysburg Address. She continues to be a guest speaker and panelist on development and stakeholder engagement for a political and non-profit organizations.

But today Marie is facing her toughest battle yet. In 2012, Marie was diagnosed with Cushing’s Disease – a disease so rare it affects less than ten people per million each year. She has fought through dozens of hospital stays and numerous surgeries – including brain surgery – and still struggles daily to run her successful consulting business and a household that includes a husband and young son.

There’s a reason former Pennsylvania Governor Tom Ridge calls Marie “one of the most indefatigable people I’ve ever known.” Because while Marie drew the short straw in being one of those ten-in-a-million with Cushing’s, she has chosen not to simply live with the disease, but to use her skills honed in political campaigns to raise awareness and to fund critical research that will help those around the world who are living with this insidious disease. Already, The Conley Cushing’s Disease Fund has raised tens of thousands of dollars to fund research, to educate doctors on the signs of Cushing’s and to support her new book, A Cushing’s Collection.

Marie is not defined by Cushing’s. She is inspired by it to help others – and to leave a legacy of hope.
Marie hails from Bucks County, Pennsylvania; she lives in Elizabethtown, Pennsylvania with her husband, Chris Lammando, and their son, Carter.


The author of A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error. At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

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Aimee, Adrenal Bio

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I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

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Jody (jodiann), Adrenal Bio

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Originally posted January 6, 2008

My mother had Cushing’s Syndrome with pheochromocytomas and had a bilateral adrenalectomy in 1968, but developed pneumonia post surgery and died after 3 months in intensive care.

I have thought that I was starting to develop symptoms and was even see in her endo Dr. for years, but I was always told I was being paranoid. Then in the past ten years I have gotten diabetes, the buffalo hump, put on 100 pounds, sore joints, hypertension, low potassium, high cholesterol etc.

I finally got a CT scan due to shortness of breath, and asthma, and they found bilateral multinodular adrenal hyperplasia.

If it’s not Cushing’s Syndrome, then is there something else adrenal wise it could be? It sure seems like Cushing’s to me.

Update December 30, 2007

I was diagnosed with Cushing’s syndrome approx. 3 years ago, after gaining over 100#s, developing diabetes, high blood pressure, fatigue,muscle weakness, moon face,buffalo hump,many tests later,it was discovered that I had bliateral multinodular adrenal hyperplasia,and got the diagnoses finally,,,

my mom died from complications from a bilateral adrenalectomy in 1978,she had Cushing’s syndrome with pheochromocytomas,,so I watched her symptoms develope, and had felt sure that I was getting the same things, and finally it was confirmed,just a little difference in the diagnosis,,

however,I am having a terrible time getting any understandin, sympathy, or belief, from my oldest daughter and her husband. They believe,and tell me often, that all I need to do is diet,and exercise,and I would lose this weight,and look like I used to,,it is so depressing,frustrating,and hurtful,,,

the depression you get with the disease just adds to make me feel worse,,I’m taking an antodepressant, but they brought this up again at Christmas,due to me not wanting them to invite people that I hadn’t seen since before the big wt. gain,and appearance changes,,,I ended up crying most of the afternoon,,and it makes me feel like such a baby,,,,

I’m usually pretty good about not needing any body but myself for support,,but this just really has hurt me. I’m thinking of sending them pictures of patients with the disease that I’ve gotten on the internet,,although the son in law said he had done his own research and found that diet and exercise apparently was all that we needed to do,,,don’t know where he found that info from though,,,

Update January 6, 2008

CUSHING’S SYNDROME

I was finally diagnosed in approx. 2004,after I had developed diabetes,htn.,shortness of breath, IBS, high cholestero,major muscle aches,moon face, buffalo hump,and my hands and feet had actually gone up one ring,and shoe size and also had on-going depression, mood swings, anger issues,I could watch myself gain weight.

I joined curves,went every night after work, and still gained weight,,even after exercise for those three months I never did seem to regain any muscle strength or ability,,I still had trouble getting up from chairs,or walking any distance, unless I was pushing a grocery cart, or a stroller,,,I had trouble even carrying my groceries in from the car,i would be so out of breath,,I had to get a disabled parking sticker so I could get into work,,,as I was so out of breath if I parked in the lot across the street it would take me three stops for breath each day to make it in,,,and tired, I was so tired,,my favorite past time was sleeping,,I could sleep any time, and still be tired.

My mom had died from complications from a bilateral adrenalectomy due to Cushing’s Syndrome in 1978, and I had watched all of the changes she and her body had gone through,and felt sure that I had developed the same things, but I couldn’t get anyone to listen to me,,,until a unrelated chain of events lead to me getting a U/S of my chest, and a sugested follow up,which I got on a larger scale which showed something wrong with my adrenal glands, then an MRI of them revealed bilateral multinodular adrenal hyperplasia,,,and finally I got hooked up with a good endocrinologist,,am now getting better follow-up of my diabetes and am on ketaconazole to suppress the cortisol production,,which has helped somewhat,and is stopping the excess cortisol,and no more weight gain,,,but hasn’t gotten rid of any of the symptoms either.

There are a lot of times that I look in the mirror and wonder where I am, or where the real me went to,,I don’t look like the me that I used to be at all,I have gained over 100lbs.in the past 13 years,,,and the fight against the depression, the muscle aches and pain, and fatigue every day or so exhausting,,my Doctor doesn’t want me to get the adrenalectomy due to the loss of all steroids,and how difficult it is to regulate them after the surgery. He also told me that you lose you fight or flight response because you don’t have any natural adrenaline,so your reaction time is not very good,,,,,and I have three grandkids that I drive iwth and take places,and I am a nurse and have to be able to react fast,,,,I also feel that he doesn’t think that I am a good candidate for surgery.

So there it is,,and here am I,,,trying to deal with everyday life, and the lack of any understading or sympathy from some of my family,as they feel that I have gained this weight on my own, and if I just ” took better care of myself,and got some exercise” I would feel and look better,,,,,,,as if any one would do this to themselves,,,,,,:>( ,,,,,,,,,,oh well,you guys understand at least,,,,,,thanks for listening

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Kandis, Pituitary Bio

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golden-oldie

 

Last Updated December 6, 2008

My diagnosis was Pituitary Cushing’s Disease. Had transphenoidal that did not work and ended up having a bilateral adrenalectomy.

Here is a link to my website that has my story and several pictures. I welcome any questions/comments/conversations!

Update November 7, 2007

I just want to update my bio to say that the address of my website has changed. The address of the new website that I have that contains my story and pics (and some new pics) is now:

http://www.KandisMcCartney.fasthoster.info/index.html

Update December 2008

When I finished writing this story over a year ago, I hoped that I wouldn’t have to do any additions, at least not for awhile. However, after marrying the man of dreams in August 2008, the man who stuck by my side through all of this, I started developing some frequent headaches. Nothing horrible, but growing ever more persistent. I had been slowly growing a deeper and deeper tan, so much so that I couldn’t go out into the sun for more than a few minutes without a high SPF sunblock or my skin would turn REALLY dark. We went to the Dominican Republic for our honeymoon, and people thought I was a native I was so dark by the time we left. I always knew that there was the possibility of me developing Nelson’s Syndrome, but I always hoped it wouldn’t happen. I pretty much knew going into my MRI at the end of September that my tumor had grown, especially after finding out that my ACTH levels had doubled in a matter of months. Sure enough, when the results of my MRI came back, we were finally able to see the little booger that had been evasive up until now. My adenoma was clearly visible at approximately 8mm located on what was left of my pituitary gland. My new endocrinologist (my former doctor went into research for awhile) along with my amazingly talented neurosurgeon, as well as the radiologists agreed that I should give a second transphenoidal surgery a try. They felt that with my age, desire to have children, and current condition, it was the best choice for me. The neurosurgeon felt he would have a good chance for success this time, especially since the tumor was now visible. He said that as long as when they got up in there and there was a clear difference between what was normal tissue and what was tumor, he thought it would be very likely the surgery would work and he would be able to remove the tumor. I had grown to really trust my neurosurgeon and believed that this was indeed the right decision for me.

Everything happened pretty quickly, and I was in the hospital awaiting surgery on the morning of October 15, 2008. There was a delay in the start time, as the previous surgery had taken longer than expected and we didn’t have a room. They finally arranged for another room, and I was wheeled on in to have my surgery. I awoke in the recovery room to find my husband waiting there for me to open my eyes. I knew immediately, I just had this feeling that was different from my first transphenoidal, that everything had been successful. I was thoroughly amazed at how well I could breathe this time around! I wasn’t stuffy at all the way I had been the first time around. I didn’t even have to go to ICU, I went straight to my private room. The neurosurgeons came around the following morning and said that the surgery went remarkably well and I handled it like a champ. They said it didn’t even look like I had had surgery. I told them that it really didn’t feel like I had. They said that because I already had this done before, they used the same pathway, through my nose, and it wasn’t near as intense since the hole was already there. Since I had the same two surgeons both times, they knew already how they had done the first one, so they were familiar with my nose and head. I was up and walking around and everyone – doctors, surgeons, nurses, physical therapists were amazed. Everyone could see that I was ready to go home. I was released early that evening after only a little over 24 hours since my surgery.

The recovery at home was very easy, I was only off work for a few days, just to gain my strength back and make sure everything was indeed okay. My post-op bloodwork showed a significant drop in ACTH levels indicating that the surgery was indeed successful. My post-op MRI looked great as well, no signs of tumor. Of course, we can’t be 100% sure that the tumor is completely gone, and that it won’t grow back, but that is what we will hope for. In the meantime, I am so happy, healthy, and grateful to be alive and enjoying life. I will not live each day worrying about what could happen, I’d rather focus on everything good I have right now. …and I’d say, that’s a lot!

I’d like to send my deepest thanks and appreciation to the absolutely wonderful Pituitary Team at Johns Hopkins Hospital. They are some of the most amazingly talented, intelligent, and kind doctors that one could ever wish for. I wouldn’t be sitting here today so healthy and happy without them. I’d like to send special thanks to my endocrinologist, Dr. Salvatori, who always takes such good care of me, and my incredible neurosurgeon, Dr. Olivi, who I trust with my life! You are both my heroes.

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Doc Karen, Pituitary and BLA Bio

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Karen’s Story

Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work!

In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on.

In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and,  again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was.

During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”.

 

 

I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom.

You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life…

On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it.  At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back.

At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.

So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared!  Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles.

I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!

You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord!

So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day.  He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him.

Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!

Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!

Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates!

The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries!  By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread!

We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But…we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland.

Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over.

As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred Chiang, in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock.

I promised a long time ago that I would pay it forward…give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames

Additionally, I am working on a Cushing’s documentary. Please like us on Facebook at http://www.facebook.com/Hug.A.Cushie

Thank you for taking the time to read my story!

Karen has made 2 videos about her experiences with Cushing’s:

 

and

Doc Karen will be our guest in an interview on BlogTalk Radio  Friday December 2 at 11:00 AM eastern.  The Call-In number for questions or comments is (323) 642-1665 .

The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 90 other past interviews to listen to!

Kim H, Ectopic Bio

2 Comments

golden-oldie

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Kim H, Pituitary Bio

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golden-oldie

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough.

So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

 

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