I didn't blog this morning, I was just too tired. Today I cut my afternoon cortef dose, I hope this will be an easy wean, I'm still on WAY more steroids than a "normal" patient would be on almost 4 months post op, but that CSF leak and infections really put me back.
My surgery for Cushing's disease was on May 21, 2008. I had surgery at MD Anderson Cancer Center in Houston, TX. I absolutely adore my surgeon, he's such a nice guy, and extremely skilled. I actually had TWO tumors on my pituitary gland. I had positive pathology for Cushing's disease, and unfortunately the one tumor section tested was hyperplasia. To those of you who don't understand all the medical terms, it pretty much means my chance for a cure from this surgery is lower because of this. However, I've had some symptoms leave which my Cushing's doctor in California and my local Endocrinologist find very promising.
I flew home about 9 days after my surgery, and I was only home three days before I ended up in the hospital. I was diagnosed with AI, pansinusitis(severe sinus infection) and a blood clot ON my brain. Oh, and they also found another tumor/cyst IN my brain, which is near/on the pons. This has probably been there my whole life, it just decided to show up more on this latest scan.
I was admitted for 6 days and came home thinking that was the end of my troubles. WRONG. About four days later I was in such severe pain (those of you that know me know I have a high tolerance for pain) that I had to go back to the ER. I was very concerned something was very wrong. I was there for another two days while I was put on some other medications to help clear the infection and help with the pain.
I came home, and did okay. Eating and drinking was a challege, I was popping Zofran(anti-emetic) like skittles. I didn't know why, and I was really sick of eating bread. I made an appointment with my ENT and a Neurologist to figure out WHY my headaches were SO severe.
The Neurologist thought it was from chronic daily headache, and wanted to put me on a med I'm not so fond of. At this point I was concerned about a CSF leak based on my symptoms, and I asked him to order a test for it. He did, but didn't think that was an issue.
I saw my ENT, and that day I was in his office fluid came POURING out of my nostril. Those of you that know what a CSF leak is, well, this wasn't a good sign. I was just so relieved it happened in his ofice. He immediately ordered a nuclear scan to check for a leak, and within a week the test was done.
The test itself wasn't too bad, except for the pledgets. They are stamp sized cotton pieces that are placed WAY up in your sinuses. There are four of them, and they have string to pull them out. I had to walk around the hospital with strings taped to my face, and numbered too! Oh Lord, this was certainly exciting!
Dr. G called me Wednesday night, and said the test was positive for a CSF leak, and that my numbers were 4X what they should be. He told me to call my Neurosurgeon and let him know my plans. He wanted me to go back to Houston.
Thursday, July 17 I woke up, slightly bent my head, and a nasty colored fluid came running out of my nose, all over the floor. I knew this wasn't good. I called Dr. G, who said I needed to be admitted to the hospital. I just had enough time to shower and pack my things.
The plan- put in a lumbar drain to help the leak, have that in for 3 or 4 days, then surgery to repair the leak. I had a lumbar drain put in, and of course, since I'm not an easy stick, they had to do it without sedation or pain control. OUCH. I wasn't allowed to sit above 25 degrees, and I had to have a catheter put in. Oh, how I HATED that. I had surgery that following Monday, and all went well. They couldn't visualize the leak, so it must have started to seal itself up with the lumbar drain. They took A LOT of fascia from my lower abdomen, and I had about 20 staples.
The week went by pretty fast, although I really missed my baby(toy poodle). The drain was clamped Saturday night, and I was walking around late Saturday night for the first time in over a week! It was AMAZING! Sunday night my lumbar drain was taken out, stitches put in, and I was sent home. Oh, thank you God for healing me up and getting me well! Another big thank you to Dr. G, Dr. D and Dr. K who helped me so much too!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Since then, I've been doing really well. I don't bend, I don't lift, I don't do much of anything but rest, walk outside and enjoy each day to the fullest. That whole experience gave me a whole new outlook on life, and I'm so blessed to have a new start each day.
I'm off to go take some pictures, so I'll post again soon~
Nicole
My surgery for Cushing's disease was on May 21, 2008. I had surgery at MD Anderson Cancer Center in Houston, TX. I absolutely adore my surgeon, he's such a nice guy, and extremely skilled. I actually had TWO tumors on my pituitary gland. I had positive pathology for Cushing's disease, and unfortunately the one tumor section tested was hyperplasia. To those of you who don't understand all the medical terms, it pretty much means my chance for a cure from this surgery is lower because of this. However, I've had some symptoms leave which my Cushing's doctor in California and my local Endocrinologist find very promising.
I flew home about 9 days after my surgery, and I was only home three days before I ended up in the hospital. I was diagnosed with AI, pansinusitis(severe sinus infection) and a blood clot ON my brain. Oh, and they also found another tumor/cyst IN my brain, which is near/on the pons. This has probably been there my whole life, it just decided to show up more on this latest scan.
I was admitted for 6 days and came home thinking that was the end of my troubles. WRONG. About four days later I was in such severe pain (those of you that know me know I have a high tolerance for pain) that I had to go back to the ER. I was very concerned something was very wrong. I was there for another two days while I was put on some other medications to help clear the infection and help with the pain.
I came home, and did okay. Eating and drinking was a challege, I was popping Zofran(anti-emetic) like skittles. I didn't know why, and I was really sick of eating bread. I made an appointment with my ENT and a Neurologist to figure out WHY my headaches were SO severe.
The Neurologist thought it was from chronic daily headache, and wanted to put me on a med I'm not so fond of. At this point I was concerned about a CSF leak based on my symptoms, and I asked him to order a test for it. He did, but didn't think that was an issue.
I saw my ENT, and that day I was in his office fluid came POURING out of my nostril. Those of you that know what a CSF leak is, well, this wasn't a good sign. I was just so relieved it happened in his ofice. He immediately ordered a nuclear scan to check for a leak, and within a week the test was done.
The test itself wasn't too bad, except for the pledgets. They are stamp sized cotton pieces that are placed WAY up in your sinuses. There are four of them, and they have string to pull them out. I had to walk around the hospital with strings taped to my face, and numbered too! Oh Lord, this was certainly exciting!
Dr. G called me Wednesday night, and said the test was positive for a CSF leak, and that my numbers were 4X what they should be. He told me to call my Neurosurgeon and let him know my plans. He wanted me to go back to Houston.
Thursday, July 17 I woke up, slightly bent my head, and a nasty colored fluid came running out of my nose, all over the floor. I knew this wasn't good. I called Dr. G, who said I needed to be admitted to the hospital. I just had enough time to shower and pack my things.
The plan- put in a lumbar drain to help the leak, have that in for 3 or 4 days, then surgery to repair the leak. I had a lumbar drain put in, and of course, since I'm not an easy stick, they had to do it without sedation or pain control. OUCH. I wasn't allowed to sit above 25 degrees, and I had to have a catheter put in. Oh, how I HATED that. I had surgery that following Monday, and all went well. They couldn't visualize the leak, so it must have started to seal itself up with the lumbar drain. They took A LOT of fascia from my lower abdomen, and I had about 20 staples.
The week went by pretty fast, although I really missed my baby(toy poodle). The drain was clamped Saturday night, and I was walking around late Saturday night for the first time in over a week! It was AMAZING! Sunday night my lumbar drain was taken out, stitches put in, and I was sent home. Oh, thank you God for healing me up and getting me well! Another big thank you to Dr. G, Dr. D and Dr. K who helped me so much too!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Since then, I've been doing really well. I don't bend, I don't lift, I don't do much of anything but rest, walk outside and enjoy each day to the fullest. That whole experience gave me a whole new outlook on life, and I'm so blessed to have a new start each day.
I'm off to go take some pictures, so I'll post again soon~
Nicole
1 comment:
Hey, Gal!! Your blog is gorgeous!! Keep it up!! Do you want a "cushie blogger" emblem to put on it somewhere?
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