Tiramisu Posted July 1, 2015 Share Posted July 1, 2015 My oldest dd is in the middle of her second round of testing related to a tumor that was discovered near her pituitary six months ago. She will also have another MRI next week to see if there's been any change. They are trying to rule out a specific condition related to the tumor that would require surgery. I've been a little worried this last week because I've noticed more symptoms related to that condition. She also recently started treatment for an autoimmune disease. I also have ongoing and new behavior issues with two of my other kids. They are getting help, but when I'm tired, I question my ability to manage it all. I couldn't visit the Hive for a week because a storm knocked out our phone and internet connections. It's good to be back in touch. 10 Quote Link to comment Share on other sites More sharing options...
MEmama Posted July 1, 2015 Share Posted July 1, 2015 Sending positive thoughts your way! 1 Quote Link to comment Share on other sites More sharing options...
Eagle Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: Thinking of you and your family. 1 Quote Link to comment Share on other sites More sharing options...
Pink and Green Mom Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: A friend went through something similar with her daughter and I know how stressful it was for the entire family. 1 Quote Link to comment Share on other sites More sharing options...
J-rap Posted July 1, 2015 Share Posted July 1, 2015 Got it! 1 Quote Link to comment Share on other sites More sharing options...
lllll Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: Praying. 1 Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Forget-Me-Not Posted July 1, 2015 Share Posted July 1, 2015 (((Hugs))) that is stressful! 1 Quote Link to comment Share on other sites More sharing options...
MooCow Posted July 1, 2015 Share Posted July 1, 2015 Praying for you and your family ! 1 Quote Link to comment Share on other sites More sharing options...
MeghansMom Posted July 1, 2015 Share Posted July 1, 2015 Prayers!!! 1 Quote Link to comment Share on other sites More sharing options...
MyThreeSons Posted July 1, 2015 Share Posted July 1, 2015 Praying for you as requested, and that you would experience that peace that passes understanding as you wait. 1 Quote Link to comment Share on other sites More sharing options...
Stacia Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Woodhaven Posted July 1, 2015 Share Posted July 1, 2015 I definitely will be praying for all the things you mentioned!! 1 Quote Link to comment Share on other sites More sharing options...
Kimberly in IN Posted July 1, 2015 Share Posted July 1, 2015 Praying for you and your family. :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted July 1, 2015 Share Posted July 1, 2015 (Hugs) 1 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted July 1, 2015 Share Posted July 1, 2015 Praying :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted July 1, 2015 Share Posted July 1, 2015 Praying for you and your children. 1 Quote Link to comment Share on other sites More sharing options...
Chess Dad Posted July 1, 2015 Share Posted July 1, 2015 Praying :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Seasider Posted July 1, 2015 Share Posted July 1, 2015 Prayers! (((Tiramisu))) may the Lord strengthen your mother's heart, miraculously stretch your physical and mental energy, and show you windows of time for rest He carves out for you. Praying also for clear diagnoses, concise treatment plans, healing, and for a blanket of peace to cover your other children as you walk through this together. 2 Quote Link to comment Share on other sites More sharing options...
Lady Florida. Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: Thinking of your dd, you, and the rest of your family. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Corraleno Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
ashfern Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
scholastica Posted July 1, 2015 Share Posted July 1, 2015 Praying for all of you! 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 1, 2015 Share Posted July 1, 2015 Praying here! My dh had surgery for a pituitary tumor and I was so worried about it, but it actually turned out to be very simple and straightforward and my dh was only in the hospital overnight, and after the surgery, his symptoms (vision-related) went away. The surgery sounded so scary, but my dh was just fine, and I'm praying that your dd will have a similar experience if she ends up needing surgery -- which I'm hoping she won't! We were very careful about choosing the very best surgeon, and he was wonderful. I don't know if he works with children, but if you would like his name and location or if you have any other questions at all, please feel free to send me a PM. I am praying for your whole family, and especially for you, because there is nothing worse than when a child has a medical problem and you are waiting for answers and cures. :grouphug: 3 Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted July 1, 2015 Share Posted July 1, 2015 Good to have you back with us!! Praying for your family's needs. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted July 1, 2015 Share Posted July 1, 2015 Sending prayers for good news and more. :grouphug: Glad your connection is back too! 1 Quote Link to comment Share on other sites More sharing options...
PrairieSong Posted July 1, 2015 Share Posted July 1, 2015 Praying for you and your family, Tiramisu! 1 Quote Link to comment Share on other sites More sharing options...
umsami Posted July 1, 2015 Share Posted July 1, 2015 I will be praying for you all. A friend of mine had pituitary surgery when she was in her 20s. I believe her surgery was at UVA. She's done extremely well since...no issues. 1 Quote Link to comment Share on other sites More sharing options...
*Lulu* Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
El... Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted July 1, 2015 Share Posted July 1, 2015 Prayed. 1 Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted July 1, 2015 Share Posted July 1, 2015 Praying. I'm so sorry, but hopeful for good resolution. 1 Quote Link to comment Share on other sites More sharing options...
TeacherZee Posted July 1, 2015 Share Posted July 1, 2015 Keeping you and your family in the light 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted July 1, 2015 Share Posted July 1, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Tap Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted July 2, 2015 Share Posted July 2, 2015 I'm glad the storm is past and your internet is back on. Praying for your family. :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Greta Posted July 2, 2015 Share Posted July 2, 2015 :grouphug: I'm sorry that you are going through this, and you will indeed be in my prayers. 1 Quote Link to comment Share on other sites More sharing options...
DawnM Posted July 2, 2015 Share Posted July 2, 2015 Is it a tumor near her pituitary or is is a pituitary adenoma? Praying. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted July 3, 2015 Author Share Posted July 3, 2015 Is it a tumor near her pituitary or is is a pituitary adenoma? Praying. Unfortunately it's not clear because it's in the area of the left side of the pituitary. The first radiology report, first endocrinologist, and another specialist I consulted called it an adenoma. The neuro-endocrinologist after consulting with a neuro-radiologist, I think, is calling it a neoplasm of the pituitary and craniopharyngeal duct. Tumors of the craniopharyngeal duct are, like pituitary adenomas, technically benign but can be very problematic in that they grow and attach to nearby structures. My understanding is if it's that and it shows signs of any sign of growing, it will have to be removed. If it's a pituitary adenoma, they have to make sure it's not a ACTH producing adenoma. That causes Cushing's Disease and would have to be removed. In the last year, dd has gained significant weight and developed other signs of Cushing's so they are taking that very seriously. It's a scary possibility and that's why she's having to do extensive and continued hormonal testing. Initially, I was hoping it would be a prolactinoma because that can be treated with medication, but the doctors disagree about whether it could be that because her prolactin levels are high but not that high. I'm actually hoping it was just something she was born with, was always there, and will never change, or even just disappear. 2 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted July 3, 2015 Author Share Posted July 3, 2015 Prayers! (((Tiramisu))) may the Lord strengthen your mother's heart, miraculously stretch your physical and mental energy, and show you windows of time for rest He carves out for you. Praying also for clear diagnoses, concise treatment plans, healing, and for a blanket of peace to cover your other children as you walk through this together. Just perfect! Thank you! Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted July 3, 2015 Author Share Posted July 3, 2015 I will be praying for you all. A friend of mine had pituitary surgery when she was in her 20s. I believe her surgery was at UVA. She's done extremely well since...no issues. Thank you for this. I am looking at a specific neurosurgeon at UVA because he's so highly respected when it comes to pituitary surgery. I've already contacted his office and got advice about how to get the right testing. I was very impressed that they were so caring. There's also a neuro-endocrinologist at UVA who is supposed to be absolutely amazing in managing hormone levels after surgery, when the pituitary often shuts down for a while. If it ever comes to that, I will be reaching out to the Hive, because UVA would be a trip for us and I don't know anything about the area. 2 Quote Link to comment Share on other sites More sharing options...
unsinkable Posted July 3, 2015 Share Posted July 3, 2015 ((((Hugs))) I'm praying for you all. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted July 3, 2015 Author Share Posted July 3, 2015 One urine test done! One saliva test done! 8 am bloodwork done! Two saliva tests, one urine test, one MRI to go to finish this round. UPDATE IN 79. 6 Quote Link to comment Share on other sites More sharing options...
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