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.