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Minnie's Surgery
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I hope everyone had a wonderful Christmas! ![]() I had surgery for Cushing's disease at Oregon Health and Sciences University (OHSU) on December 23rd. I've wanted so much to send you all a big Texas Howdy, but just now have the energy - lol. I am doing quite well! I thank all of you for your kind thoughts and prayers. You know, I've supported pit patients for all these years, but I just never expected to have such wonderful warm feelings myself from all of your nice postings, e-mails, cards, and flowers. I had mentioned to Jean that my hubby was kinda dismayed that my surgery would be right about Christmas. She surprised the whole bunch of us by having a sleigh delivered right to the hotel room, stuffed with greenery and a plump santa! It was nice having our own little "Christmas Tree" right there in the hotel room. ![]() . I arrived on Saturday the 18th, and we just ran around Portland and enjoyed the Christmas lights and good food. I had to do pre-op testing on Sunday and Monday and tried to sneak in some shopping those days. On Tuesday, I had to do a Cavernous Sinus Sampling test, where the nerointerventional radiologist runs catheters from the femoral veins in the pelvis to the base of the brain, where blood sampling is done. The purpose of this test is to make sure that the source of the ACTH hypersecretion is from the pituitary. It can also help the surgeon know what side of the pituitary the tumor is on. The test was a little uncomfortable. It took about an hour to do, and I was lightly sedated. About the most uncomfortable part was feeling the wires scratch behind my eyes. The neurosurgeon/neuro-interventional radiologist Dr. Barnwell, was really pleased with the placement of the catheters, and got a few samples simultaneously from both cavernous sinuses. I had a 2 hr recovery after the procedure, then was sent home to rest with orders to minimize walking, bending, etc for 24-48 hrs. I did get out the next evening to see National Treasure ![]() . The test didn't work out quite like the endocrinologist wanted. Oh, the test showed the source was pituitary, as the ACTH was 56 on the LEFT side, and 5 on the RIGHT side, but the MRI showed the tumor was on the RIGHT side. To confuse things more, the pre-op testing for Cushings showed that the tumor wasn't hypersecreting at the time of the test. The neuroendocrinologist sent me off to get a CAT scan, to ensure there wasn't a tumor in the lungs (ACTH dependent ectopic source). Fortunately the lung scan was clear, and surgery was still set for the 23rd. Thinking about pituitary surgery is nerve wrecking! To have the surgery really isn't that bad though - course I was in experienced hands, which I think made a big difference. ![]() Dr. Delashaw was the attending surgeon, along with Dr. McMenomey as ENT. Dr. Delashaw had also a neuroendocrine surgeon fellow assist him, along with about 5 others. Dr. Gonzales was my anesthesiologist, and he was very nice. He explained that I would be given a sedative, and then after they have the room and me set up, he will ask me to take deep breaths. OHSU uses intraoperative MRI for pituitary surgery, and I was pretty much checking the room out and not particularly paying attention to Dr. Gonzales. I remember him telling me... Mrs Jones... you need to take deeper breaths - lol. Surgery was supposed to be scheduled for 1:00 on Dec23rd, ![]() but was delayed a few hours due to other cases before me. I was originally blocked for 5 hrs (boy those guys pull long shifts!). I went in to surgery at around 5:00 and was into recovery about 8:00. I was in my room about 9:00 p.m. When I woke up, what was on my mind was Christmas. It is so nice to dream about Christmas, even if I did just have pituitary surgery. I remember that I was amazed that I could still breathe! I expected nasal packing and stitches in my stomach, but to my surprise, my nose wasn't packed except for a mustache bandage at my upper lip, and there was no fat taken from my stomach. My hubby later told me that Dr. Delashaw's attending surgeon had come out to talk with him and let him know that they did indeed find a tumor at the midline (common with ACTH secreting tumors), and that he felt he did remove all of the tumor. He also mentioned that I didn't have a CSF leak, which explained why I didn't have nasal trumpets, plugs, or packing and which also explained why I didn't have any fat taken from my abdomen, or even a remaining lumbar drain. The first night was tough - my oxygen level was a little low from the anesthesia, and I was instructed to breath oxygen through my mouth. Oh my... talk about drying out the stitches in and around my mouth... and I snored SO bad! lol. I woke to the ENT's discussion my 'sleep apnea'! I explained to the neurosurgeon fellow that it was simply because of circumstance! ![]() I was treated like a princess by the OHSU staff. ![]() I found the doctors caring and compassionate and I really liked the way they took time to take very special care of me. Dr. Ludlam is the neuroendo that solved my endocrine case last September, and I think the world of him. He is a very attentive doctor and kept a close eye on me during my stay. Dr. Delashaw also had Dr. Moza, faculty neurosurgery, keep a watchful eye on me, as well as two female neuroendocrine fellows ![]() . While I was there, the doctors did a test that required them withhold my hydrocortisone replacement. ACTH secreting tumors cause the adrenals to secrete too much cortisol, and one of the ways to see if they resected the tumor completely is to see if the body is making cortisol post op. What they do, is after stabilizing the patient for 24 hrs, they withhold hydrocortisone after the morning 8 a.m. dose, then measure cortisol levels at midnight, at 6 a.m. and at 9 a.m. The next morning dose should be less than 5 in order to fall into the 90% percentile cure. My 6 a.m. cortisol was 3. Dr. Ludlam is reserved that the surgery was indeed successful, and he feels that I will need to be watched closely over time, simply because of where the location of the tumor was, because the midline hormone secreting tumors are difficult to completely resect. I am an optimist though, and I think Dr. Delashaw really did his best. I actually feel differently, and my thinking is different. Golly... you should see my skin - it is beautiful! I am also going through the cortisol withdrawal ![]() - what an experience! Dr. Delashaw didn't hide that is is quite pleased with my post-op labs. I know Dr. Ludlam doesn't want me to get my hopes up though, because midline tumors are really hard to completely resect. But... I personally, I felt like doing the happy dance! God... you should have seen the house shoes I wore at OHSU! I even got a chuckle out of Dr. Delashaw. ![]() The doctors sent me home with 40 mgs of hydrocortisone 3x per day, then start weaning down in a week. I also have some transient Diabetes Insipidous, and am on DDAVP. I take a tablet once at night. The plane ride home was tough. After we got home, we rested, and celebrated Christmas. It is so good to be home! ![]() I'm sorry I hadn't written earlier, as I get tired pretty easily. I am just so wonderfully overwhelmed with everyones caring and support and I wanted to let you know how it really means to me. I hope to catch up with everyones postings in the coming days, as I get my strength back. I'm good for about 2hrs in the morning and about the same in the evening. Thank goodness my mom came to help me! Happy new year everyone! Minnie |
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