This blog is about my journey to beat Cyclical Cushing's Disease and hopefully raise awareness to others so that someday this information could possibly save the life of yourself, a family member, or a friend.
Today is April 30th and that means that I have completed the 30 day challenge to help raise awareness for Cushing's. I am really glad that I have been able to share my journey with people and I really hope that somehow my story has made an impact or that it will make an impact on someone. When it comes to your own health please remember that no one knows your body better than you. If something is wrong and you feel it, please believe in yourself and trust your instincts. Never give up on finding answers. Sometimes the path to finding those answers is a very long and bumpy one, but with strength, courage and a whole lot of research you can and will find those answers. It's also so important to have a good support system in place. It's not always easy for those who are living on the outside of an illness to understand the daily struggles we have, but it's important to surround yourself by people who care and believe in you.
I can't speak for everyone, but I know for the majority of my illness my family has been very supportive of me. Initially when you bring up a rare disease to your family they don't want to believe that it is even in the realm of possibilities. Cushing's is one of those diseases that most people just don't understand. We can eat a fat free, no carb, low calorie diet and exercise and still gain weight. While trying to exercise we could damage our bodies even more because Cushing's destroys muscle and bones. I managed to break my foot by stepping on a piece of dog food. Who breaks their foot on a piece of dog food? That is just one of the many things this disease has done to weaken my body.
This top 10 things to not say to someone with a Chronic Illness started floating around Facebook a year or so ago. My illness is actually caused by stress, so number seven is quite laughable. Cortisol is a stress hormone, so it is indeed stress. As for number five, it actually is/was in my head! Just thought I would share this because you really do hear some of these things when dealing with a chronic illness such as Cushing's Syndrome.
In July I am looking forward to going to something called The Magic Convention which is hosted by The Magic Foundation. It is being held in Lombard, Illinois which is a suburb of Chicago. My Neurosurgeon, Dr. Ian McCutcheon will be speaking at it along with several well known Endocrinologists and last but not least a dear fellow Cushie who will also be speaking and is a Clinical Psychologist. Dr. Friedman has been a guest speaker for The Magic Convention in the past, but will not be there this year. I am really excited to hear them talk about Pituitary disorders that effect Adults such as Cushing's, Adult Growth Hormone Deficiency and Panhypopituitarism. However, most of all I am looking so forward to meeting some of my fellow Cushie friends who I have gotten to know and love over the years. One of my dearest online friends is coming all the way from Canada and I cannot wait to give her the biggest and most gentle bear hug on earth! These are my people, the ones who understand every little thing I am going through and it's something that no one else on this earth can fully understand except them. I just can't wait to be in a room full of freaks like myself and feel NORMAL for the first time in my life. I think I'm more excited to meet them and go to this convention than to go to Disney and that is saying a lot, folks.
Thank you for sharing in my journey and I hope you will continue along with me as I update on my progress. One day I will be rid of this disease, but I will always carry the scars of my battle.
When I decided at the last minute to join in with several other Cushie's to do the 30 day challenge of blogging about Cushing's to help raise awareness, I had no idea how much time and effort would go into writing and how much it would grow to mean to me. I've spent hours every day thinking about what to write, reading my own medical records, looking up information and just reliving my own journey that has gotten me to this point in my life.
I don't know why I decided to do it, but I'm glad I did. It's been very therapeutic for me to write it all out. I've been meaning to do it for a long time, but just never had that fire lit under my butt that got me motivated enough. I figured that writing about my journey may someday help someone else who is on their path looking for answers. Maybe it will encourage someone to never give up, keep looking for answers or just help someone to understand they are not alone in this. Cushing's can make a person feel very isolated, but with the power of the Internet it has brought so many of us with this "rare disease" together. We are able to share our own trials and tribulations and also mourn the losses of those that our community has lost. This blog has also helped my family and friends to better understand what it is I have been through and continue to go through on a daily basis. Every day I wake up and my goal is simply to survive the day. One day I hope and pray that I will be able to plan so much more than that, but for now I am grateful that I am alive and still able to function as best as my body allows me. It's not as much function as I'd like, but I know there are many out there that are dealing with so much more than I am. It isn't easy being me, but it's the only me that I know. I embrace it, but I will always strive for more. I was born to fight and fight I shall.
If this disease does happen to defeat me, it is nice knowing there will be a piece of me forever left on the Internet and that some day my children can read it and know that I never gave up. I fought to get better and no matter how big the obstacle I kept on because I do not want my children to grow up without me. It's amazing how powerful love is. There is nothing in this world that can defeat it. I know that sounds cheesy, but it's my love for my family that keeps me sustained during my darkest hours. It brings me back out of the darkness and allows me to see that there is always a reason to fight and always a reason to hold on to hope.
If this blog has touched just one person and helped them to better understand what Cushing's is then I feel that somehow my misfortune has a purpose.
Today I want to talk about some of the complications that can arise after Transsphenoidal surgery, specifically bleeding. As with any surgery there is a risk of complications, infections and bleeding. However, I do not feel that I was properly informed on exactly what to expect if something rare did indeed happen. What happened to me with my arterial bleed was very, very rare. It has been noted that it was possibly from my arteries being in a weakened state from Cushing's itself, but after doing some research I am not 100% sure this is accurate.
There are a lot of things that could have happened, but what happened to me on day 13 post op has actually been seen in several rare cases and was considered a delayed epistaxis because it did not happen during the surgery itself. There is a possibility that my arteries were somehow injured during the procedure itself, but I am fairly confident that was not the case. However, I will never really know. They talk about the possibility of a carotid or sphenoplalatine artery injury and how there can be something called a false aneurysm or pseudoaneurysm that could have been to blame for what happened to me.
I am concerned by what I read in this PDF file because there were several instances where the bleeds happened again throughout a two to ten year span. One patient died while trying to control the bleed. I will not lie, I fear every single day that this artery will just start bleeding again. I have such intense pressure inside of my head and sometimes something just feels really off inside of my sinuses like it did the night the bleed happened. The PDF is a long read, but there is a lot of information pertaining to the rare arterial bleeds that can happen after this type of surgery.
I wish that I had known there was more of a possibility of this happening, but then again perhaps it's so rare they just don't mention it. Honestly, knowing would have in no way prepared me for what I experienced that night. It is one of those moments in my life that will forever plague me and make me feel feelings I really don't care to feel. It was by far the most traumatic experience of my life. Now, I have to really fear that it COULD happen again out of the blue. Add that in with the possibility of needing sinus surgery which means they will be in that area again makes me an absolute mess. I feel I could face any challenge life can hand me, but thinking about going through another artery bleed like I did that night makes me seriously want to crawl into bed and cry. I don't want to ever go through that again.
I think that some type of angiography should have been done on me to really investigate the situation fully, yet it wasn't done. I feel that I am a ticking time bomb. I have not felt right since that bleed and what if there is still something massive just waiting to happen? I've said it before and I'll say it again, being rare and complicated stinks.
PURPOSE: To define the role of angiography and embolization in the treatment of patients who have arterial injuries during transsphenoidal surgery. METHODS: We retrospectively studied the arterial hemorrhagic complications, their management, and the clinical outcomes that occurred in 21 of the more than 1800 patients who had transsphenoidal surgery for pituitary adenomas.
RESULTS: Of the 21 patients who had complications, 17 had internal carotid injuries and four had injuries of the sphenopalatine artery. Angiography was performed in 18 patients. Bleeding occurred and was controlled during surgery in 16 cases. Delayed epistaxis occurred in 10 patients, including five whose surgery was uneventful. After internal carotid injury, the most frequent angiographic findings were carotid occlusion (eight patients), stenosis (five patients), and false aneurysms (three patients). Internal carotid balloon occlusion was performed in five patients. No rebleeding occurred in patients who had complete carotid occlusion either from surgical packing or balloon embolization. Two of the patients who had carotid stenosis after surgical packing had delayed epistaxis necessitating balloon occlusion. Injuries to the sphenopalatine artery were successfully treated by surgery (one patient) or by endovascular treatment (three patients) without complication. Three deaths and five permanent deficits were directly related to the arterial injury or its treatment.
CONCLUSION: Profuse bleeding during or after transsphenoidal surgery should be investigated by angiography. Lesions of the sphenopalatine arteries are effectively treated by embolization. Internal carotid injuries are best treated by carotid occlusion to prevent life-threatening epistaxis.
Index terms: Adenoma; Surgery, complications; Pituitary gland, neoplasms AJNR Am J Neuroradiol 18:655–665, April 1997
In my blog I have mentioned Cushing's Disease as well as Cushing's Syndrome. They are the same, yet they are different.
Cushing's Disease points specifically to a pituitary source where there is an overproduction of ACTH, however it can still be termed Cushing's Syndrome. All other endogenous sources that are listed below are coined as Cushing's Syndrome, but only a pituitary source gets the name Cushing's Disease.
Pituitary adenomas cause 70 percent of Cushing's syndrome cases,1 excluding those caused by glucocorticoid use. These benign, or noncancerous, tumors of the pituitary gland secrete extra ACTH. Most people with the disorder have a single adenoma. This form of the syndrome, known as Cushing's disease, affects women five times more often than men.
Ectopic ACTH Syndrome
Some benign or, more often, cancerous tumors that arise outside the pituitary can produce ACTH. This condition is known as ectopic ACTH syndrome. Lung tumors cause more than half of these cases, and men are affected three times more often than women. The most common forms of ACTH-producing tumors are small cell lung cancer, which accounts for about 13 percent of all lung cancer cases,2 and carcinoid tumors-small, slow-growing tumors that arise from hormone-producing cells in various parts of the body. Other less common types of tumors that can produce ACTH are thymomas, pancreatic islet cell tumors, and medullary carcinomas of the thyroid.
Adrenal Tumors
In rare cases, an abnormality of the adrenal glands, most often an adrenal tumor, causes Cushing's syndrome. Adrenal tumors are four to five times more common in women than men, and the average age of onset is about 40. Most of these cases involve noncancerous tumors of adrenal tissue called adrenal adenomas, which release excess cortisol into the blood.
Adrenocortical carcinomas-adrenal cancers-are the least common cause of Cushing's syndrome. With adrenocortical carcinomas, cancer cells secrete excess levels of several adrenocortical hormones, including cortisol and adrenal androgens, a type of male hormone. Adrenocortical carcinomas usually cause very high hormone levels and rapid development of symptoms.
Familial Cushing's Syndrome
Most cases of Cushing's syndrome are not inherited. Rarely, however, Cushing's syndrome results from an inherited tendency to develop tumors of one or more endocrine glands. Endocrine glands release hormones into the bloodstream. With primary pigmented micronodular adrenal disease, children or young adults develop small cortisol-producing tumors of the adrenal glands. With multiple endocrine neoplasia type 1 (MEN1), hormone-secreting tumors of the parathyroid glands, pancreas, and pituitary develop; Cushing's syndrome in MEN1 may be due to pituitary, ectopic, or adrenal tumors.
1Nieman LK, Ilias I. Evaluation and treatment of Cushing’s syndrome. The Journal of American Medicine. 2005;118(12):1340-1346.
2Govindan R, Page N, Morgensztern D, et al. Changing epidemiology of small-cell lung cancer in the United States over the last 30 years: analysis of the surveillance, epidemiologic, and end results database. Journal of Clinical Oncology. 2006;24:4539-4544.
Endogenous versus Exogenous: Endogenous means produced or growing from within. Exogenous means originating or produced outside of the body.
There is also the most common type of Cushing's Syndrome which is the exogenous form and it's called Iatrogenic Cushing's Syndrome. This type of Cushing's is caused by glucocorticoids that are prescribed by a physician for other diseases or ailments. People who suffer from allergies, asthma and even organ transplant recipients who need to keep their immune systems suppressed need these type of steroids in order to function, but it can come with the cost of developing this form of Cushing's Syndrome. Usually tapering or lowering the dose will alleviate all symptoms, but for some it may not be an option to get off of the steroids.
In the Cushing's community we usually refer to this type as steroid induced Cushing's.
There is even something called Pseudo-Cushing's Syndrome.
"Pseudo-Cushing syndromes are a heterogeneous group of disorders, including alcoholism, anorexia nervosa, visceral obesity, and depression, which share many of the clinical and biochemical features of Cushing's syndrome. The mechanisms responsible for the genesis of pseudo-Cushing's syndrome are poorly understood. It has been suggested that hypercortisolism of pseudo-Cushing syndrome may be the result of increased hypothalamic corticotrophin-releasing hormone (CRH) secretion in the context of a hypothalamic-pituitary-adrenal axis that is otherwise normally constituted. The substantial overlap in clinical and biochemical features among several patients with Cushing syndrome and those with pseudo-Cushing syndromes can make the differential diagnosis difficult. Distinguishing between pseudo-Cushing's syndrome and true Cushing's syndrome is critical for preventing the unnecessary and potentially harmful treatment of such patients. This brief review summarizes the main pathophysiological events of pseudo-Cushing syndromes and provides a useful strategy for differential diagnosis."
Pseudo-Cushing's Syndrome is explained in great detail in this PDF on Dr. Friedman's website.
Feeling confused? Imagine all the testing necessary to determine which type you specifically have.
Today my husband and I have been married for 15 years! I am really glad that I've been lucky enough to be married to a great man who has stood by me during some pretty rough times. When we got married I was already sick, but I didn't know I was sick. I didn't even know what Cushing's Syndrome was, but I knew that my weight and weight gain was not normal and something always seemed off about it. I was still able to function as a normal person for the most part. Almost all my jobs during that time had crazy hours, so I was always up until 5 in the morning, so maybe I never was aware just how off my body was. It seemed normal for me to be up all night and then finally feel myself getting tired when the sun would come out.
I wish I could turn back the clock and know all that I know now. Back in 1997, the Internet was not a fraction of what it is today. Most households didn't have a computer or the Internet yet. I suppose even if I had known what I know now, I still wouldn't have been able to connect to all the other Cushie's online and read about all their stories. The stories that have inspired me, given me the courage to keep on my path, the strength to continue to learn more about Cushing's and help fit all the pieces together.
It is truly amazing and crazy at the same time how much the world and myself have changed during those 15 years. I hope that in another 15 years I am able to look back and reflect how much my life has changed for the better. My kids will be adults, possibly in college, and I will be better and able to look back and reflect on how something so wonderful can be born from the depths of such a devastating illness. I will defeat this.
I had to have a CT of my sinuses done today. They tried putting in and I.V. six times and blew several veins before they called down another nurse to use a Doppler to find a better vein. It was not a fun ordeal, but thankfully the seventh try was a success and I was finally able to get the CT scan done. Cushing's has obliterated my veins and today was a reminder of just how sick my body still is. I hope that they figure out why everything smells and tastes off and figure out why I can't get rid of these infections since my surgery. Hopefully I will know something soon. I am just ready to get whatever is going on in there taken care of. I feel it's hindering my recovery so much at this point. Here is to hoping that they see what the problem is and the remedy is fairly simple. I'm not looking forward to the possibility of surgery, simply because I am petrified of them messing in the same area that I had the artery bleed in, but I know that I need to do whatever is necessary to get better. All I have to do is look at my kids and my husband and the solution is simple. Fight on.
It's not easy to think of the good when you have an illness like Cushing's, but today I want to reflect on how having this disease has made me a better person and the lessons it has taught me that have forever changed who I am and how I see the world differently.
I have learned the true meaning of compassion.
I have learned I am a much stronger person than I ever imagined I could be.
I have learned to cherish the simple things in life that often get overlooked by the hustle and bustle of life.
I have learned that there are far, far more important things in life than money. Of course I wish I had more to make life easier for my family, but love really does make the world go round.
I have learned to never judge a book by it's cover. I find it very, very important that my children understand to not judge anyone by their appearances or disabilities. You really never know what someone is going through.
Being positive is a wonderful thing, but it is okay to be down and out once in a while. We are all human after all. Life isn't always sunshine and rainbows, so why pretend it is?
I am learning to accept myself and believe in myself. I still struggle with this because people are judgmental, but I am trying to come to terms with the fact that I am awesome in my own way, even if close minded people can't see past my Cushie appearance. It really is their loss if they choose to judge me by my looks alone. I am so much more than this disease.
I have learned that no matter how rough the storm, every once in a while the sun does still come out and shine down on you.
Having Cushing's has allowed me to befriend so many amazing people who are wearing the same shoes I am. I do not wish this disease on anyone, but without my online support of my fellow Cushie's, well, I really don't know how I would have coped and learned as much as I have today.
Having Cushing's has allowed me to see that angels really do exist on earth.
It has taught me to always, always trust my instincts.
It has taught me to never give up. No matter how many times I was shunned, told I wasn't sick, etc. I never gave up. I took my much needed mental breaks, but I never gave up believing that I was sick or searching for that one doctor who would finally believe in me.
Doctors are human. Do yourself a favor and cut your losses if you have a bad one who isn't willing to work with you. There is someone out there who will believe in you and help you find the answers you seek. It may not always be the ones you want to hear, but a good one will take the time to believe in you and test you until there is no stone unturned.
Always take time to smell the roses so to speak. You really never know what tomorrow holds and if there is one thing I have learned from having a near death experience it's that it can all be over in a blink of an eye. Don't sweat the small stuff, just remember what is really important in life. Your family, loved ones and friends.
Always hugs your loved ones and let them know how much you love them.
Always strive for your health and happiness. You are worth it.
This will be a short entry as I haven't been feeling so great today. I have had a bit of adrenal insufficiency and slept the majority of the day away. However, when I was awake I felt a sense of grief which I do periodically with this disease.
I mourn the loss of all that should be normal in my life, but it is not. Yesterday I left the house to go to a dentist appointment, then stopped by my mom's to pick up my son and then we went out to eat and hit the grocery store. I knew that it was probably going to be too much for my sick body, but I just wanted to have a day that felt "normal." I was feeling sick before I even left the dentist's office, but I kept on because I wanted to be able to spend the evening with my family and just soak it all in. It's funny how something so many take for granted is something that I look forward to.
I paid for it dearly last night and today. I knew it was going to be a rough day when last night I was in bed before 1 A.M. and was hardly able to speak a coherent sentence. Plus, the pain had set in so badly I was doing nothing but gnashing my teeth to will it away. I had two and a half hours of sleep the night before and was running on empty. This morning I woke with such a headache. I knew it wasn't a normal headache, it was one saying my body was running low on cortisol from overdoing it yesterday. I also found myself running to the bathroom more times than I care to admit. TMI I know, but it is the reality of what I deal with and I promised myself I wasn't going to hold back while writing about what I deal with. I still believe I have Cushing's, but I still cycle so I have low days mixed in with my high ones. It's such a cruddy feeling. When I am low I find myself being more depressed than usual as well.
I just hope one day that I am able to look back on all of this and realize that these were my dark days. I want so badly to be able to take my kids to Disney World. My daughter, bless her heart has said she wants to become a doctor so that she can make mommy better. She has a heart of gold and wants nothing more than to see her mom get better so that we can do normal things together. I just want to be able to feel good enough to go bike riding, swimming, walk around Disney and so much more with my kids. I just want to scream sometimes "WHY ME?" "What did I do to deserve this?" It's a sick and cruel joke to be blessed with two miracles and then not be well enough to do the everyday normal things with them.
On these days I remember my Grandma. She was sick the majority of my life, but she meant the world to me. It didn't matter what we did together as long as I was with her. I enjoyed cuddling with her, just talking, making dinner and just being in her company. I wouldn't have traded it for the world. I just hope that one day my children can look back and think about me in that same manner. I don't want them to ever feel like they were short changed because their momma was sick. I hope my love will be enough to sustain them through these rough times.
Cushing's affects every aspect of my life. I will not let it define me as a person, but I cannot lie that it takes up entirely too much of my life. It really needs to go and with a quickness.
An extreme textbook image of the striae that is usually indicative of Cushing's.
One of the biggest things I cannot stress enough with this disease is that you do not have to be textbook in order to have this disease. One of the biggest reasons I was told for years that I couldn't possibly have Cushing's was because my striae (stretch marks) were not wide enough, nor dark enough in color. Textbook would say that in order to have Cushing's you usually have deep red or purple striae, this is not always true. I have always had fairly thin ones and they sometimes were a light silver to light pink color, but late at night when my cortisol levels would increase they would turn a bright red color. Of course every time I was at the doctor's office I was low so they were never able to witness the color changes that I was able to see late at night.
These striae can be all over your body. On the breasts, abdomen, shoulders, buttocks, back, thighs, legs and on your lower belly area near your privates. It's not bad enough that Cushing's makes you feel like crap, but it also terrorizes the appearance of our body as well.
Another big one is the 24 hour urine free cortisol tests. It's considered the gold standard test for Cushing's, but if someone has episodic or cyclical it may be very hard to catch a high. Once in a while you may get lucky and catch a high one, but more often than not it is very hard to catch with cyclical. The logic being is that for the majority of those who cycle we have extremely high levels of cortisol late at night when our numbers should be bottomed out, but during the morning and day our levels would bottom out. So, in essence our 24 hour collection could still look normal because we are still catching a low and a high which ends up averaging out the numbers. However we need to prove that our diurnal rhythm is flipped which is something that is very common in cyclical Cushing's. One of the reasons I chose to go to Dr. Friedman is because he has testing protocols in place to help catch those late night highs for those of us that are hard to diagnose. He allows us to do a 10 hour urine collection from 10 P.M. until 8 A.M. and he then uses the average of the cortisol and creatnine ratio to determine if we were high during the night. He also tests using midnight blood draws if someone has a hard time catching a high with urine which measures free cortisol versus serum cortisol . It's nice to have options when you are dealing with the less understood side of Cushing's.
There are many symptoms that aren't usually listed in textbooks as a sign of Cushing's, but when you put all the pieces of the puzzle together they tell a story that can point to Cushing's. I have had an elevated white blood cell count for at least the past 13 years. I started noticing a pattern when I went in to have carpal tunnel surgeries and also my knee surgeries. They were afraid to proceed in fear that I was fighting off an infection, but I informed them that this was normal for me. Excess steroids in the body will cause your white blood cell count to be elevated. Also, a lot of people with Cushing's have Vitamin D levels that are extremely low or completely bottomed out. There are just so many different symptoms, but like I said before you have to put all the pieces of the puzzle together and then it all starts to fit. Just remember to keep fighting and always do your research. If I had listened to all the previous doctor's I would still be sitting here wondering what happened to me, but instead I took charge of my life and educated myself the best I could so that I could fight this disease head on.
First off I want to share a dear friend's blog post regarding an article that was found on ehow.com about "how to avoid Cushing's Disease." The article is full of false information and my friend Jessica took the time to point out the errors and explain in great detail why they are false and also made sure to send this information to the writer of the article. Jessica's blog post can be found on her "brain tumors can make you fat!" blog. Also here is the link to the article that is being addressed on ehow.com which is full of horrible, horrible misinformation.
Please take the time to read the blog entry. It is full of amazing information for anyone who has Cushing's or suspects they may have Cushing's.
One of the biggest kickers for me was reading this lovely tidbit about sodium.
"Limit sodium in your diet as much as possible. Although some salt is necessary for survival, excess salt will reduce swelling from the pituitary gland. A lowered intake of salt will also help high blood-pressure, which is a symptom of Cushing's disease."
If only I had know that limiting my sodium intake would have kept me Cushing's free I would have ditched it years ago. *rolls eyes* This is the type of misinformation that makes people look ridiculous when they go into a doctor's appointment thinking they are armed with good information that might help them get diagnosed or get to the bottom of what is causing their illness. Please do your research and make sure you have facts from a reputable source. I am a firm believer in doing your research, especially with this disease. Most of the people that I know with Cushing's have had to become their own advocate and educate themselves on every aspect of the disease. So many of the professionals who are trained in this field really are just doing guesswork. It's very disheartening, so please educate yourself to the fullest and seek a physician who is extremely qualified and knowledgeable in Cushing's. Most Endocrinologists only deal with diabetes and thyroid issues and have been taught that they most likely will not encounter a Cushing's patient while practicing medicine. Educate yourself so you can save your life or that of a loved one. Cushing's does and will kill you if it is not diagnosed and treated. Be your own advocate!
I am still dealing with this lovely infection inside of my nose and sinuses. I went to the ENT on Thursday and they cleaned out as much gunk and scabbing as they could get. The instrument was buried so far inside of my nose that even the handles were almost hidden. Thankfully they numb you up otherwise I would have probably lost it. They finally took samples and are sending them off to find out exactly what we are dealing with. He is hoping that since I now have an anti-fungal to add to the mix of antibiotics I use in my nasal nebulizer that it might clear up everything without surgery.
I am still smelling that cigarette smoke smell, but it has started to shift into something new as well. I now cannot smell certain things without wanting to gag. I use this apple scented Dawn dish soap to clean my nebulizer parts with and then all of a sudden it started smelling extremely foul to me. Then I noticed that I was smelling this even when I wasn't washing the parts. Then yesterday I made myself a salad and the salad dressing tasted like perfume. Today I went to take a bite of a banana and it was like it had been soaked in the most awful perfume. I immediately spit it out in the garbage. It was one thing to be dealing with just a scent, but now it's affecting my taste. The same thing happened when I tried to take a sip of diet coke today as well. The ENT thinks that the smoke smell could be from the infection, but now it's shifting and starting to make me think there is something much more serious going on.
I googled information about the issues I have been having and came across this article on msnbc. "By all means, a phantom smell could mean something serious," says the psychiatrist and nationally recognized smell and taste expert. "It absolutely needs to be evaluated. It could be a tumor – that's on the top of your list of things to rule out – but it could also be a cyst or some infectious agent housed in the area of the brain where the smell is processed." Brief episodes of phantom smells or phantosmia – smelling something that's not there – can be triggered by temporal lobe seizures, epilepsy, or head trauma. Phantosmia is also associated with Alzheimer's and occasionally with the onset of a migraine. But it's not typically something sweet that's conjured up by the brain. "It's usually more unpleasant stuff or odors that are hard to describe," says Hirsch. "People will say it's chemical-like or talk about a burning smell." Common olfactory hallucinations include lots of icky odors. Sufferers report smelling hydrogen sulfide (rotten eggs), bad perfume, garbage, a gas leak, wet dog, pungent body odor or spoiled fish or feces. The brain may trigger such sickening odors instead of agreeable ones because humans learned very early to avoid noxious smells for survival. "I think a larger area of the brain is represented by bad smells than good smells," says Hirsch. "And they also may be easier to 'fire off.'"
I am nervous because I have had an infection brewing in there and a fairly easy way for an infection to travel into my brain after having brain surgery. All I know is I will be contacting the ENT on Monday and most likely trying to contact my Neurosurgeon to get his opinion and set up my post operative MRI. I was told to wait until the sinus infection had been cleared out some, but since I'm having Cushing's symptoms and now this odd smell and taste issue, I think it may be time to get an image of whatever is going on in that noggin of mine.
I remember a day many, many years ago when I thought once I got diagnosed I would have my surgery and things would just miraculously get better in a very short amount of time. Ah, the days of being naive. I have sure learned a lot since then and I still continue to learn more about this disease every day.
Today marks three months since I had my pituitary surgery to remove three tumors at MD Anderson Cancer Center in Houston, Texas. It sometimes seems like yesterday and other days it feels like it was forever ago. Up until my artery bleed on February 2nd, I truly believed I may have been in remission. I really noticed good changes in myself. Every single day I still want to believe there is a chance that I am in remission, but in my heart I know that I am not.
Dr. Friedman has told me he believes I am in remission, but he is also concerned that I am having massive problems sleeping again. It's been almost a month since I have talked to him and things have drastically gotten worse. Every week I work on weaning down on my hydrocortisone which is a steroid that I've been on since surgery. Every week my dose gets lower, yet my symptoms are getting worse. This doesn't make sense unless I am still sick. I've suspected it for quite a while, but mentally I am coming to terms with the fact that it's not gone. I weaned myself down an additional 1.25 mg today so that puts me at a total replacement of 12.5 mg of hydro per day. I'm hoping within a month or two I can be completely off it so that I can begin the testing process again. I hate that I have to prove I'm sick all over again, but I am so grateful that I have Dr. Friedman as my doctor. I know he will never dismiss me and will always allow as much testing as necessary to prove or disprove that I'm still sick.
Why do I think I'm still sick? Roughly two weeks after my surgery while in the hospital for my artery bleed I started noticing I was having a hard time sleeping at night again. The previous two weeks I had been asleep by 11 or 12 at night. That was super early for me. I would wake up at six in the morning and actually feel fairly decent considering I was still very much in the recovery process from brain surgery. As time has progressed the insomnia has become so much worse. I am no longer able to even fall asleep before 6 A.M. and some days it has been as late at 1 in the afternoon. I will finally fall asleep only to wake back up within three hours and then I do it all over again. I am so sleep deprived, but I cannot sleep. I know that my body needs rest so badly, yet I am unable to make it sleep. During the night I will notice my face turning bright red again and also my lovely "tiger stripes"(striae aka stretch marks) are changing to a bright red color. My supraclavicular fat pads seem to be getting larger, my belly is getting more firm again and hurts to be touched. After my surgery my belly became soft and didn't hurt anymore, so this coming back is frightening to me. My rash on my arm and scalp are back in full force, the swelling is coming back and my cheeks are puffing out again. I swear I noticed a new dimple in my cheek simply from it being bloated more than it had previously been. I'm not understanding how my symptoms can actually be worse than they were prior to my surgery, but somehow they are and it's disheartening.
I really wanted to have a happier post for being three months post op, but I do not. However, today I am feeling a little more positive about it. I have my days where I am extremely sad, then I'm angry and then days like today where I feel like putting on those boxing gloves and punching this disease right in the face. One day I will get my cure, I may have to have my adrenal glands taken out to do it and I'll be trading Cushing's for Addison's Disease. However, anything is better than Cushing's. I know that my life will never be normal, but I know that it can be a lot better. That is worth fighting for. :)
This blog is about Cushing's Awareness, but it's also about my personal journey. It took me a good fifteen days just to get caught up on my current situation and it seems that every day something new seems to come up. Later today I'm going back to the ENT to have them stick a scope up my nose again and clean out whatever is still causing that smoke smell. Apparently I was supposed to have an anti-fungal in my mix of medications that was supposed to be put in my nebulizer, but it never got ordered. I got a call from the company who handles my nebulizer medications today and they told me it would be roughly $90 for just the anti-fungal for a 30 day supply. Plus, I'm almost out of my previous supply of two antibiotics, a steroid and the saline. Apparently they changed the way they bill and something that should have cost $25 is now $90. Apparently they are now able to bill for each individual ingredient that goes into the medication. My fear is tomorrow I will find out that I have to pay $400 for something I previously paid a little over a $100 for and that even included the nebulizer. Being sick is very expensive. I'm unable to work, but we have to make ends meet on one income.
I put in a claim for disability and I really hope that I get approved. I will be very discouraged if I do not, but I will continue to appeal it until I do. This disease has really made me feel like a burden to my family. My poor husband works to keep our heads above water and picks up all the slack with the chores that I am unable to do. I really lucked out in the husband department. He has stood by me through some really dark times and yet he still wants to be with me. I think he is crazy, but I appreciate him more than I can ever express. I know if the roles were reversed I would be right there to take care of him as well, but I just can't help feeling like such a burden to all my loved ones who are continually doing the things *I* should be doing.
Cushing's causes all types of mental disturbances. Depression and mood swings play a very big role in this disease. Any person who has been diagnosed with a disease that is debilitating and alters your life and your life expectancy would cause depression, then you add in the hormone imbalances and you have yourself quite a mental mess. The mood swings can be all over the place. Some people experience rage just like "roid rage." Cortisol is our bodies natural steroid, so when there is too much of it we experience the same types of side effects as someone who chooses to abuse steroids. Something that would normally frustrate a person can send us over the edge in a fit of rage. Another issue that I personally have is I am extremely hypersensitive to criticism. I take things entirely too personally and am often filled with horrible anxiety over situations that I know I cannot change. I have a very hard time of letting things go when I am upset. Years ago I took several different types of medication for depression, but I didn't find any relief from them. I ended up getting off of all of them and just cope with my episodes of depression. I honestly don't think of myself as a depressed person all the time, I think what I experience is situational depression. I am depressed because my life isn't where I want it to be and my recovery is not even remotely close to where I expected it would be. Every day I try to see the good in the situation, but I look in the mirror and see my cheeks puffing back out and I get very sad. It's hard to hold on to hope every day when you don't see any positive changes, but I do still have hope. I am a fighter and I will keep on trucking along because one day I will be able to finally say that I beat Cushing's Disease. I hope you all stick around to see it, because it will be one of the best days of my life.
Another mental issue that happens to a lot of people with Cushing's is memory loss. I never really experienced this until about two years ago. I started taking the drug Diamox for my brain pressure issues and after that I started noticing that I was having a very hard time remembering every day words that I would use. I had to actually stop mid conversation and dig around my brain to find the correct word to pull out and use. I have always been known for my amazing memory and now I have to actually spell check simple words. Yesterday I couldn't remember if you spelled the plural of son as sons or son's. It's silly stuff like this that I am forgetting and it's very, very frustrating to me. Someone can tell me something and by the next day I will have forgotten it. It's one thing that Cushing's stole my body, but now it's taking my mind and I am not okay with that. I feel my IQ dropping every day and it's upsetting. I hope that I am able to reclaim my brain one day when this is all behind me. I miss it.
There are so many different aspects of my life that have been affected by Cushing's. The biggest and most noticeable to start with was the weight gain. You don't gain 100lbs in less than a year without people noticing. I became so self conscious of myself and still am. Every time I go out in public I see people look at me with that look of disgust. I can just hear the thoughts inside their heads. How could she let herself go like that? Why doesn't she just change what she eats or go work out at the gym? It happens every single place I go. Everyone tells me that I am being absolutely ridiculous, but I know it. I see the look on their faces. Years ago before my husband and I got married. Roughly a year or so after the weight gain started I was doing everything in my power to lose weight. I was going to Jenny Craig and behaving 100%, I was riding my mountain bike all over the city and yet I still wasn't losing a darn pound. I remember this moment where this car full of jerks yelled out at me and called me a fat ass and told me to lose some weight. Hello?!! Was I not on my bike trying? I remember riding my fat ass home and just crying. I was sick of the comments, sick of trying and sick of never seeing any positive results.
This was floating around facebook tonight.
Quite fitting for my post.
Do people have any idea how much those words have impacted my life? How hurtful a word that can be a big joke to some can be absolutely devastating to someone else. Do I believe there are overweight people out there who should be doing a lot more for themselves? You betcha, but I don't think it is fair to look at someone and think it is okay to tear them down. Everyone is fighting a battle, it may not be an invisible illness like Cushing's, but I promise there is a battle of some sort. I often think of getting a shirt that says something along the lines of "Do my brain tumors make me look fat?" I would of course add something about Cushing's disease on it, because I want people to be aware of what this disease is. I want people to know that not everyone who is fat is doing nothing but shoveling food in their mouth. I want nothing more than to be able to be active again, but my body is a mess right now. Some days I can try and push myself for a walk around the store, but thirty minutes of walking and I am spent. It takes me days to recover and I'm usually so weak and nauseous by the time I get home that I wonder why I ever thought it was a great idea. I did it to feel alive again. I miss living a life where I could just take off and do things at the drop of a hat.
I will also see people joking about having brain tumors. I'm sure everyone at some point thinks it's absolutely funny to blame their oddities and headaches on a tumor. Having lived through this ordeal I can tell you it's absolutely not funny. These tumors have destroyed my life and I do not find it amusing one bit. They have stolen at least eighteen years of my life from me. Years that I should have been able to spend in the prime of my youth, but instead I feel 90 and I'm only 36. It is not funny.
I guess my point in this post is mostly to just think about your words. Think about the looks you give someone. Try not to be so judgmental. Those looks and words can harm someone for the rest of their lives. Look at them and give them a smile or say something kind. I promise those type of words and actions will also be remembered just as much as the hateful ones.
I had my next phone appointment with Dr. Friedman in March to discuss my newest test results. My cortisol had risen a few points and so had my ACTH. A few of my thyroid numbers looked wonky, but in the grand scheme of things Dr. Friedman thinks for now that my thyroid is okay. He wants me to have a glucagon growth hormone stimulation test done so that we can be 100% sure of how deficient I am with my growth hormone levels. If I fail the test, then I will start taking growth hormone injections. I explained that I'm still weaning down as much as possible on my steroids, but that I am not sleeping well at all. He feels that I am still in remission, but he is concerned about the lack of being able to sleep at night and the fact that I am noticing very specific changes at night that only can be pinpointed to a cortisol surge. At the time of this phone appointment I was still on around 20 mg of hydrocortisone, but have since weaned down to 13.75 mg. I am set to give roughly ten vials of blood on day three of my next menstrual cycle. Now to figure out when that will happen. Nothing has been very regular since my pituitary surgery.
Weaning is a very, very difficult process for me. I've heard the horror stories for years about how hard it is and unless you have lived it you can honestly never truly understand how difficult it can be. It doesn't seem like it would be hard because our bodies are already used to excessive amounts of cortisol, but even when you take away the smallest amounts it's like every pain receptor in your body wakes up and starts screaming. I initially was doing 2.5mg weans every week to ten days. Within 24 hours of the wean I would start hurting all over. It has been likened to what a person feels like in withdrawal from heroin. I can't say for sure as I've never been a heroin addict, but it literally feels like something that would have no sensation such as your hair is capable of hurting during a wean. I feel like my bones are going to crumble, my joints will ache so badly as if there is absolutely nothing in my body lubricating them when I move. So that's the first 24 hours, then on day two I experience all of this and then get hit with nausea. Everything makes me feel like I am going to heave, but I never do. If I feel that close to throwing up I take a Zofran and lay as still as possible in bed in hopes that it will pass. Diarrhea usually accompanies all of the other symptoms and let's not forget the lovely headaches. Weaning feels like adrenal insufficiency, but as long as I am not throwing up I just try to survive it. Day three of a wean feels like a semi smashed into my body. I am exhausted, achy, still nauseous and ready for my body to start adjusting. Usually during those first three days I am able to sleep up to eight hours, but only during the day. I count on my wean days being the only days I actually get sleep during the week.
Once I got down to 15 mg from a starting amount of 25mg, I decided to start weaning in increments of 1.25 mg instead of 2.5. 2.5 mg was starting to really take a toll on me and I think the lower I get the harder it will be for me to take that big of a chunk away. I tested this theory out this week and definitely feel that I was able to work through a 1.25 mg wean a lot easier than a 2.5. However, I am still experiencing all the usual side effects, but maybe toned down a smidgen.
They say to take baby steps when weaning so that your body can gradually adjust. If I truly felt I was in remission I might not be pushing myself so hard to get weaned down. Dr. Friedman doesn't want me weaning any more frequently than once a week, so I will adhere to that. I honestly do not feel that I am in remission. Every night I am up ALL night long again. I look in the mirror and I see that red face coming back. I honestly believe it looks more red than it ever has. Even my stretch marks are more red and angry than before my surgery. Every wean I keep thinking that I will start to notice a little change for the better, but I don't. It's really, really frustrating to me. I just want this nightmare to be over with. I want to get better so that I can enjoy my life and be the mom to my kids that I want to be. I want to go on bike rides with them, take them swimming, run along side them, but instead every single day I struggle to just take a shower. This disease is very depressing and it's one that takes a huge toll on you physically and mentally.
I have days where I just look in the mirror and start crying. I know that the Cushing's is still there, but then a dear friend will tell me to hang on to hope and just wait until I am off the steroids completely to see what happens. Maybe my pituitary is awake again and everything is just extra and keeping me sick. Every day I question myself. Is it here, is it gone, will it ever get better? What will my next MRI show? If it shows tumor regrowth, will I have surgery again? Will I be one of the people who has to have their adrenal glands taken out in order to finally be rid of the Cushing's monster? So many unanswered questions. For now, it's time to wean down then start testing for Cushing's again.
I really, really hope I am wrong this time. If it is indeed back, I will put those boxing gloves back on and kick it's booty! I've got a lot to fight for and I may have my bad days, but I am not going down without one hell of a fight.
Here is a video about Cushing's that was done with my Endocrinologist, Dr. Theodore Friedman and a friend I had the honor of meeting online. She is a true Cushing's warrior! I saw this episode on the National Geographic Channel years and years ago and immediately started crying. I saw myself in this video and I remember looking up Dr. Friedman and feeling sad that he wasn't nearby. I only wish I would have found a way to get to him sooner. He truly is a genius in this field. I hope he gets cloned because without his expertise and research I would still be wandering around looking for help. I wonder how many others out there are suffering the same way I did because of the lack of understanding of this disease by the people who are supposed to be "the experts?"
Everyone who goes through this Cushing's experience and has tumors removed wants to know if they are in remission. That is the whole purpose of going through surgery. Getting those evil ACTH producing devils out so that our bodies can begin to recover and learn to function as it was intended. I noticed changes in my body immediately after surgery. My skin started clearing up, my face was starting to look thinner, my eyes weren't nearly as swollen and puffy. I felt like I was molting and all the toxic hormones that had been in excess were leaving my body. I was starting to fall asleep at an earlier hour and I noticed my body didn't hurt as much as it did before when I was laying down. I used to just lay there in so much pain that I often couldn't sleep even if I wanted to. Things were looking good. I had dropped 19.5 lbs in less than two weeks. I was afraid to get excited though. I know all too well that remission with this disease can be all too short.
Within days of my artery bleed I started to notice things changing again. I was starting to stay up later and not able to sleep again. I noticed the rash that had gone away immediately following my surgery was starting to flare back up on my left arm and scalp. I was still very hopeful that it was just my body adjusting to the lower levels of ACTH and cortisol in my system. After being released from the hospital for my artery bleed my pathology report came back on my tumors.
This pathology proves without a doubt that I had/have Cushing's Disease. It also shows that my tumors were not well defined which leaves the question of remission. I'm pretty sure that I'm one of the lucky ones who has pituitary hyperplasia, but for now I will just continue letting my body heal and wean off the steroids to see what is really going on.
Towards the end of February I had my first phone appointment with my Endocrinologist in Los Angeles, Dr. Friedman. We went over my blood work in which I withheld my hydro and also my post op numbers and the pathology report. At the time of this conversation he felt that I was in remission from Cushing's. My Cortisol was higher than it had ever been in the morning, but since I was cyclical I always had bottomed out numbers during the morning. My ACTH was also well within normal range too. He felt that because I was having adrenal insufficiency and needing my hydro that it backed up that hypothesis. However, he did agree that an infection could also be causing me to dip low. I was extremely excited, but I also felt like it was entirely too soon to tell. I did mention that I was having issues sleeping at night. He wanted me to up my hydro and perhaps try a very small dose at bedtime to see if it would help me sleep better at night. I never upped the hydro as I was deathly afraid of keeping myself sick with Cushing's. Plus, I never really felt I was dipping so low that I needed to keep taking more. I only stress dosed when necessary. The conversation ended with hope of remission and a possible cure. I was set to have 6 vials of blood taken in roughly six weeks to check all my levels again.
During this time I felt like my sleeping habits were once again returning back to my Cushing's days. I also noticed periods where my striae (stretch marks) were starting to change color late at night again. Fluctuating hormones, right?
I waited the six weeks and withheld my hydro again and did all my blood work. I got an email from Dr. Friedman's assistant and said that Dr. Friedman thinks I have a growth hormone deficiency. I was aware that my numbers were low when I went and saw him in June of 2011, but since my surgery they had bottomed out even more. Growth hormone levels for my age group should be between 106 - 368, mine was 118. I had some other concerns with my numbers and also my symptoms so I set up another phone appointment with Dr. Friedman.
Growth Hormone is a chemical substance produced by the pituitary gland, a small dime sized gland that extends from the base of the center of the brain located right behind the eyes. A number of important hormones are produced by the pituitary, including growth hormone. part of the brain just above the pituitary called the hypothalamus controls the amount of growth hormone released by the pituitary.
The amount of growth hormone released by the pituitary over our lifetime changes with higher amounts during childhood, especially during the pubertal growth spurts, and declining amounts as we get older.
Growth hormone is produced by the pituitary gland, which, in turn, deposits this hormone into the bloodstream.
This hormone can be measured in blood by taking a blood sample. The hormone normally leaves the bloodstream and enters into the tissues of the body to exert an effect. Growth hormone affects many of the tissues of the body, including bone, fat and muscles, to name a few. We need growth hormone all of our lives to maintain these tissues in proper balance.
What Does Growth Hormone Do?
Growth hormone maintains muscle, bone and fat tissues in healthy balance. Without growth hormone, these tissues get out of balance. Deficiency of growth hormone in children is easy to recognize. Children with low levels of growth hormone grow poorly and remain short. In adults, growth hormone deficiency is not easy to spot since adults have achieved adult height and have used their bones, thereby preventing further growth. The deficiency of growth hormone in adults can be appreciated by looking at body composition. Since growth hormone maintains a proper amount of fat, muscle and bone, these important parts of our bodies are not nurtured properly and change in an unhealthy direction. With this deficiency, fat is deposited more easily, especially around the middle of the abdomen, what doctors call visceral or abdominal fat. Since growth hormone affects muscles, they also change for the worse, which means there is less muscle and less ability to exercise. Bones, too, participate in the deficiency by becoming weaker (but not shorter). We call this weakening osteoporosis. This combination of more fat, less muscle and less bone structure represents the body composition changes as the result of growth hormone deficiency in adults.
Adults experience an additional problem with growth hormone deficiency. Since growth hormone controls fat metabolism, adults with growth hormone deficiency will have a change in their blood fats referred to as cholesterol. These changes result in a higher overall cholesterol level in blood, which is undesirable. The “good” cholesterol level to be as high as possible. This good cholesterol (also referred to as HDL cholesterol) changes to a lower level as the result of growth hormone deficiency, which is the opposite of what we want to be healthy.
What are some of the Symptoms of Growth Hormone Deficiency in Adults?
Adults who develop growth hormone deficiency often do not feel their usual selves. Most notice a decrease in their energy level and endurance for exercise. Some may avoid social contact or avoid meeting with or talking to their friends. Others will have deficient interest in sexual activity. Other people with growth hormone deficiency think they feel normal, but do not remember the way they felt before they developed the deficiency. These people may feel a dramatic improvement only after growth hormone therapy is started.
Causes of Growth Hormone Deficiency in Adults
Most children who develop growth hormone deficiency do so because the hypothalamus, for unknown reasons, fails to function and does not stimulate the pituitary gland to release growth hormone. There is not a visible cause of pituitary injury in most children with growth hormone deficiency. Adults, however, who develop growth hormone deficiency usually do so because of some damage to the pituitary gland. This damage results in an inability to make growth hormone in sufficient quantities. The most common cause of pituitary damage in adults is a pituitary tumor. Either the tumor itself, or surgery to remove the tumor or radiation therapy of the tumor, can result in damage to the pituitary and an inability to produce growth hormone. Less commonly, pituitary underproduction of growth hormone may result from head injury or irradiation to the head for treatment of a brain tumor. Some adults may also have under active thypothalamic drive (activity) as a cause of growth hormone deficiency similar to the most common reason for children to develop low growth hormone, but this is rare.
I really hope that one of these days I will be able to stop writing about my story and just blog about how life is good and I'm cured. It's a dream, but I believe it's an attainable one. I just have to keep as positive as I can and always listen to my body. I left off somewhere in mid February of this year. I had just finished a round of Cipro for the nasty smell inside my nose. It seemed to help, but within days of being off of the antibiotics it returned with a vengeance. It was even worse than before. The biggest issue is that after this surgery and especially after an artery bleed I was not allowed to blow my nose or anything in fear of creating a CSF (cerebral spinal fluid) leak. Most people are able to start using a sinus rinse around three weeks post op, I was not able to do one yet because my artery bleed had pushed my recovery back by almost two weeks.
I called MD Anderson yet again, and once again they called in a prescription for Biaxin this time. I told Dr. McCutcheon's assistant that if this didn't clear it up I would be seeking consult with an ENT surgeon here locally. I started the prescription and noticed the smell seemed to ease up a little, but it wasn't leaving. I can't even fully describe just how foul this smell was. I was fully aware that my sinuses were full of blood from the artery bleed and other gunk from the surgery itself, but it really had no way to properly drain so it was just sitting there becoming this nasty cesspool of infection. I would often feel chunks of stuff getting stuck in my throat. Everyone had warned me that after this surgery expect a huge scab of sorts to make it's way down your throat. You either have to swallow it or expel it out of your mouth or you will gag on it. Well, this one evening I was clearing my throat repeatedly and could actually feel something restricting my air flow in my right nostril. I tried to clear it out and all of a sudden it rocketed out of my sinuses and into my throat. I choked and gagged and out came the largest and most nasty dried blood clot covered in green mucus. I dry heaved for a good minute after that. It was absolutely the most disgusting thing on earth, but immediately the smell seemed to ease up inside my nose. This clot was the size of my thumb. I was relieved thinking that perhaps now all this infection stuff would clear up on it's own. Boy was I wrong. Within a day the smell returned and continued to get worse.
I researched local ENT's and decided on one that had great reviews and studied at Mayo Clinic. I called on a Friday and they told me they would fit me in on Monday. I was scared going in because I knew they were going to have to stick a scope inside of my nose to investigate what was going on. The Doctor was absolutely wonderful, extremely knowledgeable and competent. He numbed up my nose and took a look. He said it was still extremely raw and that I had lots of scabbing and gunk stuck in there. He pulled out this nasty, nasty scab and immediately the smell was gone!! He told me to just continue to let it heal and to come back in roughly three weeks. He also said that in maybe two to three weeks I could begin using a Neilmed Sinus rinse, but he didn't feel my recovery was far enough along yet due to the bleed. I noticed the smell starting to return within a week. I waited roughly two weeks and started using the sinus rinse and doing it oh so gently. He told me to take it very easy as to not tick off the artery that had been agitated. I was able to clear out a lot of scabbing and green gunk, but the smell would still remain. It was starting to become more foul than before. It was to the point that it would actually make me gag. I called them back and they got me in the same day. The Doctor numbed me up and took a look and said that I would need to be cleaned out in the procedure room. I was nervous, but considering the previous time he went in I barely felt anything I figured this would go okay as well.
The Doctor numbed me up pretty good and had me go to the procedure room where they had a big monitor on the wall. He used a scope and an alligator grasper forcep. I knew those instruments quite well as I used to sterilize them every day at work. He went in and started pulling out nasty scabs and other gunk that was inside of there. He then said there was an area with exposed bone and that he needed to cut the bone as to allow the skin inside my nose to heal over it. It was literally just exposed. He gets a grasper that is able to cut bone and goes in and starts clipping at the bone while I'm wide awake, not restrained and having to hold still. You really have no idea how loud that noise is unless it's happening inside your face. Thankfully that part didn't hurt, but he had to go even further down into my nose and it almost felt like it was in my throat. He was tugging on something large and it was no longer numb there. Tears started spilling from my right eye from the pain. It was horribly painful, but I was as still as a statue. Finally he felt confident he had gotten all the scabbing off that was keeping the infection underneath and that I should now start healing up nicely. He told me to continue the rinses daily, but very gently. I experienced a bit of bleeding that day, and also quite a bit of pain.
Things seemed to be a little bit better, but yet again that smell returned. I once again had to make an appointment and this time I saw his assistant since the Doctor wasn't available. A really lovely guy and of course I get the usual "I've never met someone with Cushing's before." I told him I was tired of this infection jazz and that we really needed to get to the bottom of it. I suggested nebulized antibiotics and possibly getting a swab of whatever was in there to see if it was MRSA. He agreed that at this point nebulized antibiotics were a must. They never did do a swab, but I got set up to get a nasal nebulizer that included two types of liquid antibiotics plus a steroid for inflammation. He also said that I would need to be on these for at least 30 days and then we would need to get a CT done of my sinuses to see if there is some type of permanent damage that has been done or to see if my sinuses are no longer draining on their own. They will also want a brain MRI around that time to check some other issues with the sinuses, plus I have to get my pituitary rechecked for any residual tumor or possible tumor growth.
I am pretty sure what I am dealing with is indeed MRSA. Anything else would have died off by now. Since starting the nebulized antibiotics the smell has cleared up and seems to be doing a lot better, but a week or so after starting them I started bleeding from my nose. Once again I had to be seen. They feel it was just extremely raw still and that perhaps the steroids in the nebulizer were creating more of an issue. I now rotate the steroids every other day, but within the past week have developed another new and alarming issue. I am smelling cigarette smoke non-stop. No one is smoking. I do not smoke, but it literally smells like there is a lit cigarette under my nose. It is driving me absolutely crazy. I called my Doctor this week and he feels it could be several things. The infection may possibly be getting better, there is some type of nerve damage, or honestly...we don't know. He said if it persists over the weekend to call and he will look in there. I am just so ready for all of this mess to get better. I am also taking another oral antibiotic called Bactrim DS. That makes four oral antibiotics total, nasal nebulized antibiotics and the end still isn't in sight.
I really have a feeling this is all going to result in a sinus surgery. It's one thing to have a rare disease, but now I have some rare infection and issue inside my sinuses. I would love for once in my life to just be simple and uncomplicated.
When I wrote about my artery bleed, I didn't realize how much it would bother me. It was like picking open an old scab and watching it bleed all over again. I've been through a wringer of emotions since I wrote it. I know how lucky I am to be alive, but there is always this fear in the back of my head that it can happen again at any given moment. If I have to have another surgery in the future, will it happen again? The thought of brain surgery again doesn't scare me, but that feeling of drowning in my own blood and feeling helpless...oh yes, it scares me very much.
Once I was discharged I was told to act as if I had just gotten out of surgery again and to take all the same precautions such as not bending over, no straining, not picking up pretty much anything and overall just taking it extremely easy. You never realize what a big task something like that is until you aren't able to do pretty much anything for yourself. I couldn't even bend over to turn on the shower. Since my pituitary surgery I was put on a cortisol replacement called hydrocortisone. When I had the surgery to remove the tumors it pretty much left my pituitary rendered stunned and non-functioning. For as long as I've been sick the tumors were secreting too much ACTH, which in turn sent a signal to my adrenals to create more cortisol. In a normal person their pituitary would tell the adrenals to make cortisol at certain times of the day, in times of stress and also in illness. Most normal people will have a higher level of cortisol in the morning so that it wakes you up and makes you feel alert to tackle your day. Mine was bottomed out in the morning, but at night would soar to very high levels. Much higher than that of a normal person. Anyway, what I was getting at was when they took my tumors out my pituitary basically didn't know how to function on it's own, so I have to take steroids/hydrocortisone to basically keep me functioning properly until my pituitary "wakes up." Some people experience it fairly soon after surgery, some are still waiting for it to function properly years later. It just depends on the person and the amount of damage done to the pituitary. Any time my body is in distress or if I have an infection I need to take more hydrocortisone in order for my body to function properly or else I risk going into something called adrenal insufficiency. Adrenal insufficiency can lead to an adrenal crisis which can be absolutely deadly. I have to carry around a syringe and a vial of an emergency dosing of hydrocortisone in case I start getting so ill that I cannot function or keep my hydrocortisone pills down.
Since my bleed I have experienced adrenal insufficiency quite a bit. It usually starts as extreme nausea for me and then leads to diarrhea and feeling very cold and lethargic. I also notice when I'm starting to get low I'm not mentally functioning right. I sometimes can't spit out words correctly and have said things that make absolutely no sense. At that point I take a stress dose of hydrocortisone and pray it relieves the symptoms. I also have become best friends with Zofran which is a medication for nausea.
My first real experience with AI (Adrenal insufficiency,) was on my birthday. It was exactly one week after my artery bleed and I really wanted to feel like a human and go out for dinner with my family. I had exhausted myself by just getting showered and leaving the house. Once we arrived at the restaurant I was so sick to my stomach I could hardly eat. At that point I swallowed a zofran and prayed I would make it through dinner. I ended up having to stress dose, but I stress dosed in small amounts. I would feel better for a little while and then the nausea would hit me again. It is absolutely horrible how sick it can make you feel. It was also on my birthday that I started noticing an odd smell inside of my right nostril, which was also the side they used to access my pituitary and also the side of the bleed. It started off as a meaty type smell and as the days progressed it became outright foul. It smelled like rotting flesh and was absolutely repulsive. It was all I could smell. I called MD Anderson and they prescribed me some antibiotics. They figured I had a sinus infection which is very common after this type of surgery. It seemed to help a little bit, but there wasn't much I could do. It was till too early in my recovery for me to use a sinus rinse to try and rinse out some of the gunk that was hiding up there from the bleed and surgery. I just stuck it out and hoped the antibiotics would do the trick.
A few days after starting the antibiotic which was called Cipro, I was taking a nap and woke up to the worst chest pain I have ever felt. It felt like my heart was being ripped from my chest. I literally felt like my muscles were shredding around my heart. It hurt and came so quickly. I would gasp for air, clutch at my chest and then it would pass. It happened several times then faded. Later on that evening it started again and it was becoming more frequent. I was scared I was having a heart attack or God knows what else. Once again I called my mom and asked her to come get me so that hubby could stay with the kids. My dear mom picked me up and off we went. It happened repeatedly on the way there and once we got inside they took me back immediately and hooked me up to a bunch of monitors and started an EKG to check to see if I was having a heart attack. The EKG looked fine, but of course nothing was happening when they did it. They took a bunch of blood to test my enzymes and then in came the doctor. It was the sweet doctor who saved my life just less than two weeks prior on the night I had my artery bleed. She was so kind to me and told me she adores me, but if I wanted to see her I could just come in any time without needing to be a patient. lol Her biggest concern was that given my history that I possibly had a blood clot. Once again I was sent off for a CT scan, but this time it was done on my chest and then they also took a chest X-ray. Everything seemed to be okay, so they kept me for a while, gave me more good drugs and then sent me home with some pain killers. They told me to come back if I felt it was getting worse. It happened a bit more, but did seem to settle down. After doing some research I found out that Cipro is a horrible, horrible antibiotic for some people. It can cause severe tendinitis and has many other bad side effects.
I forgot to mention earlier, that a day or two prior to my artery bleed I called in to request more pain medication and it was found out that when I ended up in the E.R. back at MD Anderson that I tested positive for a urinary tract infection. That is why I spiked the high fever, not because of anything else. They told me I needed to be on antibiotics, so at that time I was prescribed the Cipro, but when the artery bleed happened and I was put in a local hospital they decided to put me on a different antibiotic. Once I got out and felt the infection in my sinuses coming on I called MD Anderson back and they refilled the prescription to a full dose of Cipro. I do find it odd that within two days of taking it I developed an artery bleed, and then after taking it the second time I ended up in the E.R. locally with what felt like tendinitis around my heart. Was it the cause of all the issues? I will never know, but I know that I will refuse that drug for the rest of my life.
I will write more about my lovely infection in tomorrow's post. It's already almost 5:30 in the morning and I'm still awake. Oh Cushing's, how I hate thee.
It was really good to be home and be able to love on my kids. I had missed them immensely. I was on a lot of restrictions. I couldn't bed over, lift anything over 10lbs and I felt that I had to keep myself somewhat reclined or laying back with my head propped up on pillows. I relied heavily and still do on my family to help watch my children. It's been hard for me to do this because I was always the one who watched and took care of the kids. Just one of the sacrifices necessary to get on the road to wellness. I was still in a decent amount of pain, but it's the type of pain that for the most part I could work through. I mostly just slept and kept myself in the recliner. I didn't even get on the computer much because I felt it increased my brain pressure issue.
Now I will fast forward to Wednesday night, February 1st. I had this feeling of intense pressure in my head the entire evening. I had been messing around on the computer and I remember vividly once midnight struck into February 2nd I left a post on my brother's Facebook wall because it was his birthday. I decided I would take a shower and then go to bed. I went into the bathroom, looked at the tub and just felt exhausted and sick, so I decided to wait until morning. I went to the sink to brush my teeth. I started brushing my teeth and then I felt something warm hit my upper lip. Then I felt it start gushing. Blood, it was going everywhere. I looked in the mirror and panicked. Blood was pouring out of my nose and then I went to the towel closet and grabbed a handful of washcloths. It was coming so fast. I yelled at my husband to call 911. At this point the blood was coming so fast it was pouring down my throat as well. I couldn't breathe. I was literally spewing it out of my mouth in order to keep my airway clear. I remember asking my husband to help me get my clothes on. Heaven forbid, I'm bleeding to death and couldn't be caught without a bra on. That was seriously going through my head. My legs were so weak, but I was afraid to sit down. I thought if I sat down I was going to pass out and die. The blood just wouldn't stop. There were chunks of white matter coming out as well. I was sure it was parts of my brain. I had no idea, I just knew that if the ambulance didn't get here soon I was going to be dead. My husband was on the phone with 911 trying to get them here and I called my mom and told her I needed her now. I told her I was pretty sure I was going to die and I loved her, but an ambulance was on it's way. She later said I was so hard to understand because she could hear all the blood gargling in my throat when I was trying to talk. My poor husband couldn't go with me because the kids were sleeping. I thank God every single day that this happened while they were sleeping. It would have been a scene that would have given them nightmares for the rest of their lives. I told him I loved him and that I was so sorry this was happening. I told him goodbye and not goodbye because I was leaving, but goodbye because I truly believed I was going to die. There was so much blood and I was sure my brain was sliding out of my nose and down my throat.
We finally saw the ambulance lights and heard the sirens. It was so foggy out that night and they missed our house. Hubby grabbed our huge spotlight and flagged them down. We actually met them on the curb. I couldn't waste another second, because at that moment I didn't think I had much time left. They got me on the stretcher and I told my husband I loved him and I was left alone with the two EMT's. I explained that I had just had brain surgery almost two weeks ago and at that moment I swear they turned as white as ghosts. They took my blood pressure and it was roughly 200/109. They had me lay back some and hold the washcloths to my nose and mouth. Leaning back seemed to slow down the bleed and off we went to the emergency room. I was met by a team of people who wanted to be filled in on what had happened. I had the most amazing and adorable nurse and the most lovely doctor. I was surrounded by angels in that ER that night. The nurse, bless his heart helped get me cleaned up. I was covered in blood. I'm sure I looked like something that resembled a remnant from Dracula's dinner. He wiped me down, cleaned off my hands and they put a clamp on my nose to try and get the bleeding to calm down. They also gave me some blood pressure medicine because they were afraid that it being so high was causing me to bleed even more. My mom got there and kept me company and soon my husband showed up. Thankfully we have family close by that was able to take the kids so he could come be with me. I was a mental mess. I had just survived the scariest moment of my life to date. I never, ever want to live a moment like that again.
The Sphenopalatine artery is located below the sphenoid sinus, which is the barrier they went through to access my pituitary. Very close to the brain.
They sent me off for a brain CT once the bleeding was stabilized. They said my sinuses were completely loaded with blood, but as far as they could tell my brain was okay. Thank God! They ran all sorts of blood tests, kept me doped up to keep me from stressing out and also keep my pain level down. I kept having moments where I would just start crying reliving that nightmare. I couldn't believe this had all just happened. They told me they were going to have to put one of those lovely nasal pledgets back in and inflate the balloon to put pressure on the area that was bleeding. At this point we weren't really sure what was bleeding, but it was later confirmed it was my Sphenopalatine artery. I was not excited about being fully awake while they shoved that thing inside my nose and into my sinuses, but I took it like a trooper. I've been through enough hell, that this was just one small issue to deal with. They put in calls to MD Anderson to see what they should do next. In the meantime they contacted the local ENT who was on call and apparently he didn't feel confident enough to take on my case. They got me as stable as possible and then I was shipped out of town to a bigger hospital by another ambulance. I had never been in an ambulance before and I never care to see one again.
I arrived at the next hospital sometime in the morning. I was exhausted and still wearing blood covered clothing. They got me situated and then several groups of people came to see the freak. First off, I had Cushing's, second I just had some rare artery bleed so I felt like a circus freak. They all wanted to see me. Then the most awesome thing happened. The local neurosurgeon came in to talk to me and asked me if Dr. McCutcheon was my surgeon. I told him he was and he said he recognized his work on the CT scan!! He said he trained under him and knew Dr. McCutcheon very well. What are the odds that this man here locally knew Dr. McCutcheon and was put in my path on that dreadful morning? Very, very small odds, I do know that much. He later came in to tell me he got in contact with Dr. McCutcheon and he was positive that what happened was my artery just gave from being weakened by Cushing's. There are so many things that I think may have contributed to the bleed, but when it comes down to it I do believe it was just the stress of surgery and the damage Cushing's has done to me. What a hellish nightmare. They told me they were going to keep me at least four days to make sure it didn't spring a leak again. During that time they kept my pain well managed and I mostly just tried to relax and keep my head back. If I sat up I would start trickling blood again. I hate the way I was always afraid I was going to spring another leak. I almost wish they would have just gone in and cauterized the bleed, but what's done is done. On February 6th, they decided to take the balloon out. I was scared to death it was going to start bleeding as soon as they took it out, but it didn't. They kept me most of that day to make sure I was okay and then sent me home. Home where I had to relive my nightmare. Thankfully my husband had gotten almost all of the blood cleaned up and very little evidence remained, however every single time I brush my teeth and look in that mirror I am overcome with absolute dread and fear. It is something I am working through and each day it gets a little easier.
Coming face to face with your own mortality when you least expect it is something that makes you see life in a whole new perspective. You really don't know how quickly it can all be over until it almost is. This post was extremely hard for me to write. It's the first time I have ever put it into words and writing it makes me relive something that I don't like to visit often.
