PART 4: RECOVERY OR NOT?

PART 4: RECOVERY OR NOT

DECEMBER 2012, three months later, after weaning off hydrocortisol, I kept telling Mark I don’t think they got it all. I was noticing I still had symptoms. My other doctor said no they got it all, you just need to loose weight now. He told me to go on less than 1000 calories a day.  ONCE AGAIN, A COMMENT ABOUT BEING OVERWEIGHT.  My primary has never discouraged me in this way, she even said you are doing the best you can I know that.  I don’t want you to go so low in calories that it is unhealthy.

This is when we began dealing with symptoms, anemia, muscle weakness in upper and lower limbs, bone pain. So many again. So tiring again started logging everything , feeling like I was the one who was crazy, couldn’t tell if it was symptoms or recovery.

RADIATION V. SURGERY-CUSHING'S MAY BE BACK WHAT?

Finally after being off the cortisol, my testing started to come back showing signs of Cushing’s still. My doctor told us it was back, still insisting that it was tumor cells.  We had another MRI of bad quality because the correct one was not ordered. My doctor told us surgery was not recommended and radiation was our option only. 

THIS WAS NOT TRUE. After being involved in my online support groups for this disease I knew enough about radiation and surgery option to second guess this.

IN MARCH 2013, I then sought a second opinion again.

PART 3 FIRST TRANSPHENOIDAL SURGERY

PART 3: FIRST SURGERY PART 4: RECOVERY OR NOT

Posted June 21st, 2013 by Michelle Ghiassi

I feel it is important to keep continuing all of the aspects of this health journey with this rare disease and why we are where we are today.

PART 3: FIRST SURGERY

Finally, after being diagnosed end of June 2012, we were told I needed to have surgery.  And it needed to happen soon. The doctor told us you will get through surgery and be feeling like yourself in about three months.  Surgery was the first option with people with Cushing’s disease, the ACTH secreting pituitary tumor.

In my entire 38 years, I have never had a surgery and thought “well, what a big one to have for the first time”.  I was thinking rationally and requested a second opinion.  However, with the HMO process and doctors schedule I could not get that second opinion until the week before surgery on August 8, 2012.  After all the prep work had been completed.

End of July 2012, Mark and I met with neurosurgeon and they explained procedure. The next thing we know, we are having our pre operation clearance done and surgery is set. It all happened so fast. Making the decision to have surgery has never been my regret. Not researching my own disease and options for surgeons and centers is a regret because we could not or did not understand the rarity of this disease. We are not doctors and we rely on the medical providers to make these decisions for us. This is why I am telling my story.

Last week in July we did get the second opinion, and without elaborating, it was explained to us that surgery was the best option for my situation. 

 FIRST SURGERY PROCEDURE

Going into my first surgery I was scared. All of the risks were explained, heart attack, etc. Any risk you could think of is probably on the list. So I didn’t even focus on it. I didn’t even prepare myself for if something did happen it was not an option.

We arrived at the hospital, checked in, took about 2 hours from what I remember. Then I met with the anesthesiologist.  He made me laugh I and had an Australian accent. Then I was out.

 WAKING UP

Woke up, felt like seconds only and realized I had a tube down my throat and I was alert. I had a thing in my mouth and huge gauze in my nose and throat that was choking me. I tried to get up, I remember my sister, Mark and my mom being in the room.  I was alert in my mind. They told me I had been intubated (breathing tube).

They gave me a pen and paper. A doctor came in and she explained she was a pulmonologist. This was not my doctor who was on call for me.  She even tried to say my doctor was not on call.  If you know me, you know this did not go over well. I demanded my doctor and wrote it down.  All I know is I was so angry my mom told me I had to calm down because my blood pressure was high.

My doctor was there and when I saw him I became calm.  This was my pulmonologist, he explained why I had the breathing tube because I apparently have a small throat. I remember family members coming in and out that night.  I know I wanted someone to stay the night. I was scared with the tube in my throat.

 TAKING THE BREATHING TUBE OUT

I woke up in the early morning and my doctor was there to discuss taking the breathing tube out. He knew I wanted it out so he made me breathe and try and talk and then the rest of the doctors came in. I had to prove I could breathe on my own, he told me he knew I could do it. There was a crash cart waiting just in case since my throat was so small they would not be able to put the tube back in and would have to do a emergency tracheotomy if I couldn’t do it.

I did it, he pulled the tube out and I said thank God.  He let me use the telephone right then and I called Mark. He said “who is this”. It’s me “your wife, Michelle”. He was so shocked and relieved that I was talking and had a voice.

 REALITY OF GOING THROUGH A LIFE SAVING SURGERY

The second night, after having visitors all day I was worn out. Before sleeping I suddenly started crying and couldn’t stop there was no one there. The nurse heard me and she let me cry on her. The reality of everything hit me like a ton of bricks. What I had went through, how serious the surgery was, and how serious the disease was.  I was relieved to have made it. That nurse was a blessing that night along with God answering my prayers.

My nose had nasal packing until the last day of my stay and that was finally taken out. I was discharged and we headed home. Everyone said I was doing well, and for awhile I felt good but not better. I expected to feel three times worse than before surgery. When leaving the hospital they place you on hydrocortisol because you have to stay on it to avoid adrenal failure.

JOURNEY TO DIAGNOSIS-PART TWO (originally posted June 19, 2013)

JUNE 19, 2013 JOURNEY TO DIAGNOSIS PART 2

Posted June 19th, 2013 by Michelle Ghiassi

Blue Shield has denied, and why the second surgery is important. I am almost gave up on this whole process yesterday but the emotional support you have all provided me with your comments to keep fighting and moving forward.

Imagine this was the Journey to the First Surgery. And how exhausted you are reading this. I am now headed to my second surgery. Time is of the essence. You are only half way through my story.

PART TWO:  JOURNEY TO DIAGNOSIS

NEW PRIMARY, A SMALL VICTORY

In 2011, I found the new primary.  I took my organized medical history that was three inches thick.  I explained my history, who I was and what I did for work (an attorney).  The new primary looked at me and said, you are not crazy, clearly there is something going on with you physically, based on your medical history, results, and everything you are telling me.  I did not have to prove myself with her.

This was the beginning of reaching the diagnosis.  I explained I thought I had Cushing’s.  She told me how rare it was. We agreed to continue with testing and monitor symptoms.

MONITORING SYMPTOM AFTER SYMPTOM

One month, my blood sugar went up and down.  I tried to use a dietician from my HMO group, they only have one. I stopped going to her when she said that since I was undiagnosed it was difficult for her to help me and I should come back when I had a diagnosis.  Since I was using the private natural remedy doctor who was helping me loose weight but costing a lot of money, I was trying the HMO process to switch over to save us money.  Once again, the system failed me.

I checked my blood sugar almost 8 times a day for two months.  My primary was puzzled as well. I did not have diabetes but my blood sugar was borderline.  I religiously logged my food and sugar level. I was determined to prove myself to everyone that I was doing everything right. When I was on the treadmill, my blood sugar would just drop.

PARANOIA, ANXIETY, DEPRESSION SET IN

 The next month, my blood pressure would go up and down. I was so paranoid.  In the middle of the night, I used my phone to video my heart monitor that I use when I work out to show my doctor that my heart rate was low and that I was having heart palpitations.  She looked at it and still thought I was normal, not crazy.  Looking back, the paranoia (although founded by physical symptoms), the anxiety, and depression were all RED FLAGS TO CUSHING’S. I was not acting like me.  My doctor told me that I was the person who would know how I was feeling.

 Another month, my iron was low.  My Vitamin D was low and still is to this day.  All signs of Cushing’s.  I had acid reflux, which I never had before.  I went on medication for that too.  Every month there was something new symptom wise.  When you are going through an undiagnosed health situation it is important to log everything.  At one point I thought I was making it all up in my mind. 

COMMENTS THAT HURT

People tell you stuff like, maybe you are a hypochondriac, you are obsessive-compulsive, you need another distraction, you need to diet this way or that way, etc.  This is not helpful.  With this disease, it is nearly impossible to explain all of the symptoms.  Imagine your entire immune and endocrine system being affected whenever the cortisol decides to shoot out of your adrenals. This is why symptoms vary for Cushing’s patients.  This disease slowly debilitates you mentally and physically. You suffer along with the physical symptoms. Not only does it rob you of your physical abilities, you lose friends who do not understand, you loose your job, and you can even loose who you are as a person. You question everything you know about yourself.

CONTINUING TO DIAGNOSIS

 My primary was patient with me this entire time and reassured me it was okay to keep coming in monthly/or every two weeks to log my symptoms until we had a resolution. We noticed I could not loose weight anymore. I was down to 1000 calories a day. Each month I would change my diet.  I went gluten free for three months. I ate high protein low carb. I became vegetarian for two months. 

 I NEVER SHARED ALL OF THIS WITH FRIENDS AND FAMILY. IT WAS EMBARRASSING AND I WAS QUESTIONING MY OWN SELF.

 My natural remedy doctor basically told me it was all in my mind and I needed to try more and stay on the diet.  Once again, I NEVER WENT BACK. Would you?

MY LUCK CHANGED FOR THE BETTER

 My primary and I then got lucky, a rheumatologist was temporarily available in the same office.  He had an appointment right away.  Finally some luck.  I was diagnosed with Fibromyalgia that day and put on medication.  He reviewed my long list of symptoms on my legal pad, did testing and made the diagnosis.  To this day I believe that medication did help some of my symptoms and kept my immune system more calm.

 However, with all of our bad experience with doctors, I contacted Blue Shield and requested a second opinion specialist for my Fibromyalgia diagnosis. I believe that any diagnosis that can change your life so drastically should warrant a second opinion.  I went to that specialist, who confirmed Fibromyalgia as well but brought up CUSHING’S to me. 

 RULING OUT CUSHING'S WITH RHEUMATOLOGIST

The two rheumatologist agreed together to RULE OUT CUSHING’S since it was rare.  But both agreed to think outside the box based on my labwork, there was not something quite right.

2012 TWO YEARS LATER

 In May of 2012, two years later, I was referred to an endocrinologist.  We met him right away he said I believe you may have CUSHING’S.  We tested urine, cortisol levels, had x-rays and MRI done.  CUSHINGS’S WAS CONFIRMED.

 THREE MONTHS LATER, I was scheduled for my first surgery of my life.  BRAIN SURGERY. I was overwhelmed.  A week before surgery, we did obtain a second opinion.  We were told we were in good hands with this surgeon and surgery should be fine and it was our only/best option with CUSHING’S DISEASE.

NEXT POST WILL BE ABOUT SURGERY AND THE DISCOVERY THAT THE TUMOR WAS NOT REMOVED. AFTER READING THIS, YOU CAN TRY TO IMAGINE THE DEVASTATION THIS HAD ON MY MENTAL AND PHYSICAL HEALTH

THANK YOU 

MICHELLE GHIASSI

Please help in any way you can.

Please join this campaign: http://chn.ge/16BXiU7  This was created to fight Blue Shield, we are trying to get signatures.

We also have a page on Facebook called "Flips Friends" that is public

JOURNEY TO DIAGNOSIS-PART ONE (originally posted June 19, 2013)

June 19, 2013: Journey To Diagnosis Part 1

Posted June 19th, 2013 by Mark Ghiassi

Why this battle is so important for me.  Why I have not given up. Why I want to get the care I need. Why Blue Shield should consider the rarity of this disease and the journey it took to get to surgery the first time. Why everyone should have a specialist form the start.

Be forewarned this is long. I am sharing this for the first time but feel with the denial of insurance it is appropriate for everyone to know the battle we have been through and the pain this has caused for so long.

JOURNEY TO DIAGNOSIS-PART 1

August 2010, I hurt my left leg while doing water aerobics. Like many of you, I went to urgent care, the day after, and was told I pulled my calf muscle. I went to my primary doctor (who did not X-ray me) but sent me to physical therapy. The only place my HMO allowed. I thought I was going to be out of work for 4 to 6 weeks.  THIS WAS NOT THE CASE.

 After rigorously going to physical therapy and performing exercises every day, my leg would not get better. I was diagnosed with plantar fasciitis and other things.

FIRST SIGNS

During this time, I started swimming almost every other day.  I had my dad eventually swimming.  This was when I started to notice something was wrong.  My dad and I thought I had pulled my shoulder while swimming because I could not lift my arm very well and I became exhausted trying to blow dry my hair. A simple task.

My dad said “maybe you should get a stool to sit on while you are in the bathroom so you don’t get tired with your arm”.  Seemed logical to us.  I bought two stools, one for the shower and one for when I put on make up or blow dry my hair.  Now looking back, why would a 38 year old person like me need this help in the shower when I had not been injured?

Little things, daily things, like this started to happen over time. After so much swimming and physically therapy I could not flex my calf muscles and I would tell Mark, isn’t this weird? He would agree and say well maybe your body is adjusting or you have not built enough muscle in your legs yet since you were immobile when you hurt your leg.

After swimming, I would come home and sleep for several hours.  I ended up in Emergency one of the times after swimming that day because I had chest pain and could not breathe. I told Mark it felt like a snake was wrapped around my chest and stomach.  ER did labwork and the labs showed a high white blood cell count.  My doctor never did labwork the entire time.  I ended up going to a cardiologist as well.

One day, I was walking to my kitchen and lifting the Brita water out of the refrigerator, and I could not lift it.  It was too heavy. To this day, this happens with my arms, they turn to jelly and become weak at random times.  This was all the BEGINNING of CUSHING’S. Red flags I never knew existed. 

 DEALING WITH DOCTORS COMMENTS AND HMO

I explained this to my doctor multiple times and I kept getting brushed off.  I went from specialist to specialist for my pain. With the HMO I was required to obtain an authorization every time and appointments took one or two months to schedule. I went to pain management, a neurosurgeon, and even an orthopedic surgeon. I was diagnosed with sciatica, a bulging disc. I was told my pain should not be that bad etc. I was told to loose weight.  I was not obese. My doctor even accused me of being bipolar, never had a problem a day in my life. I knew something was not right.

RETURNING TO WORK

EIGHT MONTHS later, I finally returned to work, even though I still had pain in my legs and body.  I have worked since the age of 16 at various jobs.  8 months was a long time. 

The day I returned to work, in April 2010, was one of the worse days of my life. Three hours into work, I received a call that my dad had a heart attack.  That night, my dad died unexpectantly.  My mom and dad were married forever it seems.  This was a shock to my mom, sister and me.  My parents are everything to me, both of them worked really hard to give my sister and I what we needed to be successful adults in the world.  I can not begin to express how much love I have for my parents.  I have nothing to complain about. 

MORE SIGNS OF CUSHING'S:  That time is a blur.  Two weeks later, I attempted to return to work.  While driving to work, on a freeway I regularly travel, I was suddenly lost.  I called my husband and told him I was confused I was on the 405 freeway and wasn’t sure which way I was headed.  I am a regular driver, never had a problem like this.  It scared me.  This happened to me, these moments, when returning from court for work.

I ended up in ER again with the same puzzling results.  My doctor took me out of work again for anxiety.  I HAVE NEVER RETURNED TO THAT JOB. 

I can not remember exactly when I decided to switch primary doctors, best decision of my life.  I remember the moment though. Mark and I were in my primary’s office and she said “you are never going to litigate again” and made reference to me being bipolar.  Mark and I left. We felt as a doctor she was not providing me with answers.

The next specialist was a hematologist.  He listened to us and had labwork done which pointed to rheumatology.  He confirmed my labwork was inconsistent.  Once again, another referral to the next specialist.  HMO process again. The rheumatologist could not schedule an appointment for almost two months. I repeated labwork with her.  It was a waste of time. I was told there is nothing wrong with you, loose weight that will help.

I obtained a referral for mental health because I wanted help with everything.  I was not the type of person to take a lot of medication but knew I had a fairly high tolerance for basics like aspirin and allergy medication.

Mental health therapy started off well. I even took my medical file to explain my situation that I was going through an undiagnosed health crisis.  After months of this, my therapist told me I was overweight and a lot of this was due to weight gain and anxiety. I NEVER WENT BACK.

By that time, I had hired a natural doctor, who was a personal trainer, and acupuncturist.  I had lost close to 30 pounds and was doing well.  I was on a rigid diet. I kept a food log every day for several months.

I returned to my hematologist, who would not give up on me, and I found a new primary with all of this going on. I was desperate for answers.

I researched all of my symptoms on the computer and came up with Cushings’s.  I told Mark this is what I have. All of my 20 or more symptoms make sense.  Mark probably thought I was loosing it. BUT I WOULD NOT GIVE UP.

BEFORE CUSHING'S-FAMILY LIFE

June 15, 2013 "BEFORE CUSHINGS-FAMILY LIFE"

Posted June 16th, 2013 by Mark Ghiassi

Many of you have responded and asked me to write a little more about my myself:

I am 38 years old. I grew up in Norwalk, California. I attended Leffingwell Christian High School and graduated in 1992. I was in Student Council, cheer, softball, swimming. I graduated from UC Irvine with my degree in Criminology and Drama. I love singing and musical theater.  I went to law school at Western State School of Law in Fullerton, CA. I became an attorney in 2004. I had two goals in elementary school, become a lawyer or a veternarian. 

I was raised by my parents, Roger and Sandy Drake.  I have one sister, Cassie Fanton. During this time, my sister married Sean, and I now have two nieces, Kylee and Kaitlyn.  

In 2004, I started my own law practice with a friend and I also met my husband. Mark and I met on a blind date at BJ's Pizza in Long Beach, if you have been there, you will know the pazookie is the best (chocolate chip cookie with vanilla ice cream on top).  Mark was wearing tight black pants, not so cool, I thought,.  He had his pager or phone attached to his belt. I thought, oh my!. However, I overlooked that and his lovely fashion sense still exists today, better with my help. The following weekend, Mark invited me to watch one of his performances. Mark plays the French Horn and received his Masters in French Horn Performance from USC. Mark is a teacher and teaches band at two elementary schools. 

So I sat in the audience by myself, waiting for him to come out on intermission. Mark looked so handsome in his tuxedo and still does. From then on, Mark and I have not gone a day without some sort of communication, via telephone, instant message, in person, or text message. Mark met my family and they liked him right away. 

When Mark met Kylee for the first time, Cassie, Mark and I met at El Torrito to eat.  Kylee was only about 1.5 yrs old and the cutest thing ever. She started crawling all over the table and making funny noises. Mark who had never been around little babies, handled it well. We took our food home to Cassie's. That is how I knew he would be able to tough it all out. lol. 

When my youngest niece, Kaitlyn was born, Mark was there for her birth. Well not in the room, that would be weird for my sister. lol.  But this sealed the family deal for him and he proposed to me.

We were married in January 2007. Both my nieces were flower girls, poor Kaitlyn didn't make it down the aisle she got sick.  Even our first dance included picking Kaitlyn up and carrying her with us.  Mark and I do not have children due to me being sick, but Kylee and Kaitlyn are like daughters to both of us.  For years, we have attended all of their school and non school events, have taken them to Disneyland, the park, even musicals. Not sure why we took Kylee to see the Long Beach Ballet Nutcracker, she fell asleep through it. I think we, as adults, get more excited about these things than they do.  She can't even remember this. But she does remember going to Sea World and being picked to meet Seemore, the sea lion, when we took her. Score for Auntie and Uncle Mark! 

Mark and I were lucky and rented a house with a pool the first several years of our marriage. The girls, family and friends would come over all the time in summer and we had tons of BBQ's. We have taught them how to make s'mores and so many other things.   We would have swimming competitions on noodles, of course I let them win. Now they can out swim both of us and Sean, maybe not Cassie.

Mark and I bought our first home together in May of  2010. We were so excited. The day I found out and received the key, Cassie and the girls met me at the house. Mark was at work. They brought over sparkling cider and cups to celebrate in the empty house. But guess what, I promised them we would buy a house with a pool for them and we did!  So since Mark wasn't there we let them jump in the pool fully clothed and took a picture to show Mark. Yes, Mark is the more strict one, he has learned to loosen up a bit.  He had to with me being his wife. Especially when I will play jokes on him in the house, like having a water fight in the house, or scaring him when he comes out of the room. I even made Mark put on that green facial mask that is in one of our pictures on here and pretend to be the Grinch for a picture. 

The summer of 2010 was the last summer I have been able to fully enjoy with everyone without being in some sort of pain physically.  In August 2010, I was injured. I was at Glen Ivy with friends for a birthday party. I was doing water aerobics and felt a snap in my calf muscle. This is where my journey to Cushings began I believe, if not a little earlier which I will explain in another update/post. 

I hope this helps everyone get to know me more and who I am. I will continue to try and share more about who I was before Cushings and who I am now. The disease is not who I am. It has affected my life in unimaginable ways. 

HOW CUSHINGS AFFECTS YOUR LIFE

June 14, 2013 How the Disease affects my life

Posted June 14th, 2013 by Mark Ghiassi

Many people have now asked, HOW DOES CUSHING'S AFFECT YOU?

I am not a blogger. I am a private person. Many of my friends did not know I had brain surgery and how the disease affected our lives. Since I have been sick, when I go out in public I do not look “sick”.  I have gained 50 pounds due to the disease.  I did not complain after surgery and did not tell when I was in pain because I always wanted to enjoy myself when I went out and saw friends or family. 

The disease is not just about surgery, post surgery care is crucial. A recovery varies depending on damage to your body from the disease. Remission is 7 years. Cost of medication can be the same cost of cancer medication.  Cushing’s can cause and affect: osteoporosis, muscle weakness, bone and joint pain, psychosis, obesity, fatigue, diabetes, cardio myopathy, heart attacks, potential organ damage, food and medicine sensitvities, insomnia, and metabolisim of fats, carbs, proteins. This list is not all inclusive.

I was asked the question in my disability paperwork,

WHAT WERE YOU ABLE TO DO BEFORE CUSHING’S THAT YOU CAN NOT DO NOW?   I have edited my response to TEN specific daily things:

         Get out of bed, take a shower, and wash hair.  Pick an outfit, do my hair, make up, brush teeth, dress, eat breakfast.  Used to do all in one hour before going to work.  Now it takes me over the course of a few days.  I have to pick what is important.  My hair has completely thinned out and I have lost hair in the front.  I have always had really long healthy hair.

         Sort laundry without having to stop halfway through or waiting for someone to come home and help me. Do three or four loads of laundry in one day and still have enough energy to go out to dinner or see a friend the same day.

         Writing in general, my bones and joints in my hands start to get sore when I hand write. Not suffer from muscles spasms in my neck and throat.

         Make dinner for my husband. Use the stove with pots and pans, chop vegetables, move around fast in kitchen preparing a dinner and dessert. My joints and bone in hands hurt if I try to chop vegetables for long. I can not stand in kitchen because hip bones hurt too much.  I have to sit down and rest. A 30 minute meal can now take 2 hours. Then if I spend my time doing that I have to go lay down and rest with my sleep apnea mask on for at least 1 hour.

         Keep mental lists, now I have to write everything down even the smallest tasks like reminders to have husband empty dishwasher. Going shopping to many stores like the mall without worrying if I am overdoing it and will end up in bed the whole entire next day.

         If I swim I get fatigued, lightheaded. We have a pool and I have not swam in it in over a year by myself because I am afraid I will not be able to manage my pain or fatigue and will hurt myself by doing too much. By doing too much I mean being in the pool for more than an hour. I used to swim laps, do water aerobics in pool, dive and jump in pool all on my own. I can not do any of this anymore.

         I had memory problems and couldn’t remember where I was headed when driving.  I ended up in ER three times because of this.  I was on a freeway that I traveled to regularly.

         Controlling my emotions. I will be crying one hour, then full of anger 2 hours later.  You get surges of anger and you don’t know why you are angry. I was never like this before. Physically this drains your body and I can only sleep after the surges go away because your brain is mentally tired and your body has been through a huge rush of adrenaline and needs to rest.

         I have been vegetarian, gluten free, on a high protein low carb diet. Every three weeks or so I have to change my whole way of eating because my body becomes sensitive to foods and starts creating more symptoms of Cushings in my body by giving me muscle spasms.  I never had to do this before.

         Spend as much time with my nieces unlimited.

         Tolerate medicine: My body is extremely sensitive to different types of medication or just doesn’t absorb it. I usually experience side effects from medicine earlier than most people. For example, if it takes 3 weeks for a medicine to start working I feel it within the first week.

I know this is a long list and a lot for people to read through. It is not all inclusive.  After surgery, the muscles and body need to repair themselves. This may take years. I remember when my endocrinologist first told me, be careful because you might suffer weakness in your leg while driving. This did not compute. 

After surgery, one of the medical expenses not covered by insurance, is to use a endocrinologist in Los Angeles who specializes in treatment and research in my disease.  We are lucky he is on our area.  This specialist will work with your current doctor.  Cortisol and hormone replacement after surgery is necessary to live. Our body can not live without cortisol.  This can take 1 to 3 years to wean off cortisol replacement to determine if your pituitary is working. Adrenal failure can cause a person to die so it is extremely important for a person to have a specialist after surgery of this type.

It takes a lot of mental energy to write these updates and keep this fight going against insurance and trying to obtain disability.  Stress triggers many of the symptoms. Many people have emailed me and have offered emotional support now. I will continue to share with you what I can.  I truly feel blessed by the help people are providing us in any way they can.  I want to be honest and open with those who support my husband and I. My husband is my biggest supporter. Thank you.

MICHELLE AND MARK'S JOURNEY

MICHELLE AND MARK'S JOURNEY

Michelle had her first pituitary surgery August 8, 2012. There were risks involved in making such a decision for brain surgery of this type but Michelle and Mark were told this was the only option for this disease. The operation took place, Michelle was intubated because she has a small throat and that was the only complication. Michelle was in the hospital for five days and placed on hydrocortisone for three months to avoid adrenal failure. After these months, Michelle did not feel something was right and that the Cushing's was still in her body. More testing was performed, and Michelle's endocrinologist confirmed that Cushing's was still present and wanted to send her to radiation.

After researching, Mark and Michelle sought out two specialists opinions, one from USC and the other from St.John's Health Institute in Santa Monica CA. Unfortunately, both experts informed Michelle and Mark that it did not appear the entire tumor was removed and radiation was not an option. The option would be a second surgery. In the consult, Mark and Michelle were told at least five times she was going to die if this was not treated. This was shocking and heartbreaking the way it was said. It was not expected.  The reality hit hard.

Michelle now needs this second surgery along with follow up visits with specialists in the field of Cushing's disease, and possible in home care services. After surgery, you are monitored closely because you can suffer from adrenal failure. It takes at least one to three years to see improvements in muscle mass and symptoms because the excess cortisol has wreaked havoc in your entire body during the disease. After surgery, the patient is placed on cortisol replacement so they will not fall into adrenal failuire and die. Michelle unfortunately was on cortisol replacement after the first surgery because they thought it had been successful, but in fact it was adding to the existing cortisol in her body, making the symptoms worse. 

All of Michelle's current doctor's, her primary, neurologist, hematologist, neurologist, rheumatologist, gastroenternist, and optometrist are managing the health issues Cushing's has created for Michelle. Each doctor is managing the symptoms so that when the surgery is scheduled Michelle will be cleared for surgery.

Michelle and Mark have Blueshield insurance and have made the request through their doctors to be treated at St. John's Health Institute, where Dr. Daniel Kelly is a neurosurgeon specializing in Cushing's disease. Dr. Kelly had the best success rate for second surgeries for this disease in Southern California and is known nationwide. Unfortunately, Blueshield has denied to pay for these services. They have appealed the process and have also been denied.