Michael is loved by Cushies all over the world!! He goes out of his way to learn and share his knowledge with the community. I would not be watching if it were not for him sharing the video. I’m grateful that he’s a pain in your arse! 😂 I’m in Los Angeles. Dr David Kelly’s patient. I wish he would’ve been more honest about the post op nightmare. He told me that I would feel like I had a bad flu for a week and most people go back to work after 2-3 weeks. I’m 4 years post op and I will never return to work. My cortisol never totally crashed after a week in hospital. They sent me home without steroids. The following week I shook like a junkie, vomiting, pain from head to toe, I have never been so thirsty. Thanks to our Cushing’s community I understood to watch out for AI and DI. 2 weeks post op, I ended up back in the hospital for 3 days after I needed to be pushed into the endo’s office in a wheelchair and I suggested that I needed IV steroids. I feel like all I did for weeks was drink and pee for weeks. They denied that I had DI even though I peed 7 liters for a 24 hr urine! I wasn’t strong enough to shower for a month! I had terrible emotional dysregulation, everything made me cried 😢. They did put me on steroids after I left the hospital the second time. My cortisol was still in low of normal. But if someone can’t function, treat them! I explain the weakness as we go from having a nuclear plant in our heads to trying to live on a small watch battery. I was weak and in pain for a year. It was so bad that I regretted having surgery until I got to the other side. Then I had the best 8 months that I’ve had in 20 yrs. Then came the relapse. Unbelievable. I agree that the Cushing’s patients know more than most drs and they need to trust us. I got a new primary doc earlier this year and I spent our first appointment explaining the diagnostic process to her. I needed to go to the ER last weekend because I had a high fever and tested positive for Covid at home. The ER dr looked at me like I was lying about having Cushing’s! I couldn’t even sit up, I was going into shock and told him that I needed a low dose of dex. I finally had him call my endo on Saturday night. He came back with Dex in his hand and had me admitted. I also had tumor left in my right cavernous sinus, but it’s not viewable on MRI. So many Cushing’s patients have tumors that are unseen. Patients are struggling to get diagnosed and always fighting with drs. Thank you for your efforts and compassion for your patients!
Michael is loved by Cushies all over the world!! He goes out of his way to learn and share his knowledge with the community. I would not be watching if it were not for him sharing the video. I’m grateful that he’s a pain in your arse! 😂
I’m in Los Angeles. Dr David Kelly’s patient. I wish he would’ve been more honest about the post op nightmare. He told me that I would feel like I had a bad flu for a week and most people go back to work after 2-3 weeks. I’m 4 years post op and I will never return to work. My cortisol never totally crashed after a week in hospital. They sent me home without steroids. The following week I shook like a junkie, vomiting, pain from head to toe, I have never been so thirsty. Thanks to our Cushing’s community I understood to watch out for AI and DI. 2 weeks post op, I ended up back in the hospital for 3 days after I needed to be pushed into the endo’s office in a wheelchair and I suggested that I needed IV steroids.
I feel like all I did for weeks was drink and pee for weeks. They denied that I had DI even though I peed 7 liters for a 24 hr urine!
I wasn’t strong enough to shower for a month! I had terrible emotional dysregulation, everything made me cried 😢. They did put me on steroids after I left the hospital the second time. My cortisol was still in low of normal. But if someone can’t function, treat them! I explain the weakness as we go from having a nuclear plant in our heads to trying to live on a small watch battery. I was weak and in pain for a year. It was so bad that I regretted having surgery until I got to the other side. Then I had the best 8 months that I’ve had in 20 yrs. Then came the relapse. Unbelievable. I agree that the Cushing’s patients know more than most drs and they need to trust us. I got a new primary doc earlier this year and I spent our first appointment explaining the diagnostic process to her. I needed to go to the ER last weekend because I had a high fever and tested positive for Covid at home. The ER dr looked at me like I was lying about having Cushing’s! I couldn’t even sit up, I was going into shock and told him that I needed a low dose of dex. I finally had him call my endo on Saturday night. He came back with Dex in his hand and had me admitted.
I also had tumor left in my right cavernous sinus, but it’s not viewable on MRI.
So many Cushing’s patients have tumors that are unseen. Patients are struggling to get diagnosed and always fighting with drs.
Thank you for your efforts and compassion for your patients!
Great info. Appreciate the straightforward, down to earth delivery of this information. Very helpful.
Is 4.5mm pituitary cleft cyst large enough for surgery. I’m female 71 of age