no need to go into surgery details again....it was pretty much the same as before ;)  Thankfully the headaches were not as intense, nor the nausea.  Knowing what to expect allowed me to better prepare myself for the aftermath of surgery, and so I had better drugs on board...including an anti-anxiety as Cushings causes high anxiety.  I was very thankful I was on it when my post-op day 5 labs came back.....once again high numbers.  I literally threw the paper across the room.  A much more mature reaction than the first time ;)  I was not surprised as I said, I did not have the cortisol withdrawal symptoms that come with a remission from Cushings.  Even so, it was nice to dream........

Currently I am weaning off the replacement hydrocortisone (steroids) that are taken post-op.  This coming week will be my final week on them....and the fact that I have not had difficulty in weaning is another tell-tale sign that I am not in remission.  I will begin testing again once off the hydro, to see where my cortisol levels are...and I suspect that will start before the end of the April blog challenge.  My prayers are that if I still have active Cushings that it will show on the tests quickly so that I may start one of the two medication options for the short-term.  Dr Friedman has already told me that he feels I will need to have a bilateral adrenalectomy done, sigh..more surgery and this one with permanent consequences, but that is for another day.

The next 24 hours goes about as I expected. I didn’t get out of bed except to go to the restroom and I had no appetite. I was really queasy, but no vomiting. I mentally geared myself up to go get labs done on Wed, day 5 post-op withholding cortisol/ACTH labs.  Now I will say that it was pretty rough at this point, but withholding gave me a major setback. I was having lots of anxiety clock-watching and praying the time to pass. Brushing my teeth literally made me vomit. My husband bought Ensure because I could barely eat a yogurt or pudding. By Friday night I felt so awful that I insisted my husband call my neurosurgeon directly and get me an Rx for nausea.  I really thought I was prepared to feel bad, and I knew feeling bad was good…but folks this was more than I could handle.

Saturday, with the zofran on board I was able to cope through the day. By Sunday I started feeling slightly better but not well enough to take a bath until Monday. I was scheduled for an ENT check on Tuesday (day 10) and I really didn’t know if I’d be able to make the trip down even Tuesday morning. I took it slow and was able to go thankfully. My ENT ‘irrigated’ me with scope and suction and whoa! I could breathe again! My neurosurgeon stopped in at my request as I was pretty upset having received my day 5 labs – cortisol 22.6 and ACTH 114 (9-48); he admits to be surprised at how high my ACTH was, and his initial thoughts were it was still a surgical response.  Symptoms are strong indicator and I am told to not give up hope based on those labs. I got my path report too. It’s confusing at best but my neurosurgeon felt it was a ‘positive’, though he also believes that a normal path report would not be unheard of and the report should be taken into consideration of the whole picture.

Sunday morning 5 a.m. blood draw and I am feeling like total crap. Unbeknownst to me, my nurse has called my neurosurgeon concerned about me. Now she was my biggest advocate and really seemed to be on top of things, she really didn’t understand that I wanted my cortisol to keeping dropping. She kept assuring me that it was ‘in range’ when I’d ask about my most recent labs. I’m not sure if it clicked or she just knew I needed something, but her call got my hydro started. By the time my neurosurgeon comes to see me Sunday morning I am feeling a little better. Up until this point there has been some concern of DI (Diabetes insipidus)  as my urine output was really high. But my new favorite nurse goes back through all my chart and adds up exactly how much IV fluid I have received versus my output and declares it a balance. I realize I’m probably the minority here but I really didn’t want my catheter out! I knew I was going to be frequenting the restroom much more than I was ready to think about moving yet. Thankfully, by the time they pulled it that afternoon my output had resolved and it was like immediately normal. And I mean normal like it hasn’t been in a long time, Cushings definitely kicked my kidneys into overdrive,but now it seems more in a normal volume. Sunday afternoon I walked a lap around the nurses station.

 
Early Monday morning the ENT team comes and thankfully pull the nasal splints out, and I’m being transitioned to all oral meds . I am still not sure I feel completely ready to go home, but my poor husband has been spending every night with me and I know he’s wiped out. Then I get a roommate. That was my final motivator. I manage to take a shower and get discharged about 3 pm.

Endoscopic endonasal pituiaty surgery

On Aug 26, 2011  I went to Ohio State University for pituitary surgery.   I elected to have my ENT shrink my nasal turbinates while he was up in there, in hopes of stopping my snoring and maybe one day sleep better

A very early morning of 4 a.m. for the pre-op shower of harsh soap and no hair conditioner or moisturizer! Arrive at the hospital of 5 a.m. for quick registration and onto pre-op prep. Five hours later under anesthesia and surgery done.

It fascinates me how clearly I can hear and understand what is being said in the recovery room, but not muster up enough energy to utter a word. My neurosurgeon comes to check on me and explained what he found, etc. On my MRI initially a suspicious area on the left side, which was confirmed by IPSS two weeks pre-surgery. However, I was disappointed to learn that when he got there, he did not find a defined tumor. Instead he saw ‘highly suspicious’ abnormal looking cells and removed the left 25% of my gland. He explored the remaining gland, making 3-4 cuts, and found the remainder to be healthy looking.

After finally getting a spot on the progressive monitoring unit, rather than ICU, I am settled in my room early Friday evening. After this move they took my diuladid away….and I’ll be honest morphine was hardly touching my headache. Thankfully the nurses on this floor are great advocates in contacting my surgeons and getting my diuladid back.   My cortisol labs are checked every 6 hours, thankfully for the first 24 hrs they left my A-line in and was able to draw from it.   He assured me that my headache is a good sign and as long as the diuladid is there I can make it through, I’m sure of it.

The first of August I went to OSU to complete my pre-op testing, including another MRI and visit with surgeons.  During my appointment with my neurosurgeon I was shocked and disappointed when he said he really wanted me to have an additional procedure done prior to pituitary surgery.  The procedure is called IPSS (inferior petrosal sinus sampling) and is done to pinpoint the location of the tumor.  Though as my father said “if my surgeon needed a more specific roadmap than I’d be happy to cooperate” and so it was.  Thankfully the neurosurgeon who performs this procedures was able to work me in and I didn’t have to reschedule my pituitary surgery. 

IPSS is an outpatient procedure, a variation of a cerebral angiogram.  I opted to be placed under general anesthesia as it is a lengthy procedure and crucial that the patient lie completely still, flat on your back, on a narrow ‘table’ with a thin mat.  The surgeon threads a catheter up each side from the groin, through the vessels that are near the pituitary gland (located on the underside of the brain, behind the sinuses).  After the catheters are in place a hormone called CRH  (corticotropin-releasing hormone)  is given to stimulate the tumor to do its thing.  The timed samplings begin and blood samples are taken at specific timed intervals, and then the catheters are moved to other sites and more samples are taken. 

I had the afternoon recovering on the floor in the hospital, and stayed a little longer as not only was I not feeling well but I had a slight rash on my neck.  By the early evening I was released to go home, a much longer day than my mother signed up for when she agreed to take me! 

I had read on the Cushings-help message board that IPSS can throw a Cushie into a ‘low’ cycle.  Since a Cushie’s body has become dependent on high levels of cortisol, when a low cycle hits it’s quite miserable.  But what I did not expect was to wake up and find my face red and swollen.  I had been given Benadryl at the hospital for my slight rash and took one at bedtime and again in the wee hours of the morning.  But when I really got up at 9 a.m. and caught a glimpse of myself in the mirror I was shaken!  Right away I called into neurosurgery, and it was determined that I was having an allergic reaction to the contrast media used in the IPSS.  I was given a prescription for prednisone to ward of the reaction; however that is not a great medication for a Cushie.  I did a quick course of prednisone and Benadryl and within a couple days I wasn’t swollen anymore and within a couple more days I was feeling like I was recovering from the whole ordeal. 

Results from IPSS took just over a week and it confirmed the suspicion of a left-side tumor.

After choosing my surgeons, I decided to post-pone surgery until the end of the summer.  We had been planning a vacation that summer, one we’d been planning for a long time.  Since it would be nearly 4 months until surgery, I opted to take ketoconazole during the summer, a medication that lowers cortisol production.  Taking keto helped, though it took several weeks to get to a therapeutic level.  Since there is not a large population of diagnosed Cushing’s patients, there is not a strong market for disease management.  Since I have cyclic Cushings, taking a medication to lower my cortisol was a bit of a crapshoot.  Dr. Friedman gave me an initial dose, but I still had to tweak it according to how I felt and judged my cortisol levels to be.  If I took keto and my levels were not high, I would put myself at risk for adrenal insufficiency, which is unpleasant in its mild form and can be life threatening if escalates. 

 Our vacation was fabulous beyond words...it had been a dream of mine to travel to Europe and we decided to travel by cruise once there.  We took a 10 day mediterranean cruise on Disney Cruise Line and then spent a couple days in Barcelona afterwards. 

When I booked the trip I did not have full-blown Cushings, and never in my wildest dreams could I have imagined how my health would decline.  It was frustrating to be on my dream vacation, and not be able to keep the pace I envisioned.  One of the most obvious and most common symptoms of Cushings is rapid weight gain, and by the time we took our trip I had gained 50 lbs, and i am only 5' 3 1/2".  It's hard physically to carry the weight, alot of it is in the abdomen which makes me feel pregnant.  It's hard mentally to have confidence and feel good about the way I look, especially around the pool or in front of a camera.  But I refuse to give the disease any power...I swam, I posed for pictures with the princesses and Jack Sparrow and i loved every minute of that trip!  Here is a picture of me with my favorite princess....yes, I"m a disney 'freak' and proud of it ;)

There are only a handful of neurosurgeons that have done the number of pituitary surgeries to be considered among the skilled and qualified.  At first I thought was going to have to travel to Pittsburgh, but then learned of one such surgeon who came from Pittsburgh a year prior and was only 30 minutes from my home, at Ohio State University Medical Center.  My husband and I went to consult with him and both felt very comfortable with his experience, and he is one of the most caring doctors I know.  I definitely liked the idea of having surgery closer to home; I believe that I got better post-op care since I was able to easily return for follow-up appointments.  Another factor I considered a benefit was that this neurosurgeon has a co-surgeon, and ENT, do the surgery alongside.  The surgery is done endoscopic endonasal and so who better than to open the doorway than an ENT.