tag:blogger.com,1999:blog-8680575510661941908.comments2024-01-15T05:18:06.261-05:00Husband AmusedAlexander Millerhttp://www.blogger.com/profile/09502570406095911380noreply@blogger.comBlogger134125tag:blogger.com,1999:blog-8680575510661941908.post-65884533673101564492014-10-15T12:17:41.865-04:002014-10-15T12:17:41.865-04:00From your very first description of symptoms, my m...From your very first description of symptoms, my mind went immediately to "he needs more cortef/hydrocortisone." It was your body telling you to take more. Had you been up dosing/stress dosing while you were fighting a cold (with fever no less)? Extra Cortef and electrolyte drinks will always be your best friends, Ale - as soon as you start to feel "off." Your sodium was probably out of kilter as well. Happy you're feeling better. I'm going to send you a great document just to have on hand.<br /><br />Always,<br />Donnadonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-42198977960707294382014-02-17T05:33:40.536-05:002014-02-17T05:33:40.536-05:00I hope you do, too. Good luck!I hope you do, too. Good luck!Alexander Millerhttps://www.blogger.com/profile/09502570406095911380noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-85368032439563535712014-02-16T19:46:51.539-05:002014-02-16T19:46:51.539-05:00Brilliant post. Nice insight into how assessments ...Brilliant post. Nice insight into how assessments with Neurologists go and I hope you got your answers soon after this, even if they were avoiding saying any thing.<br /><br />Going to a Neurologist later this month myself for what seems like migraine/balance issues. I hope I get such a good Dr.fawnnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-18465965492427576382013-11-04T16:05:42.541-05:002013-11-04T16:05:42.541-05:00suvivor but in what state. My stephson has to hav...suvivor but in what state. My stephson has to have surgery to have it removed but is already in a nursing home because of reduced congitive function. He is unable to control impulses and has severe memory and judgement issues. He is not safe to be by himself and is not safe in a home enviornment and all this before we even go into surgury. All that damage happened because the pressure was too high in his head so they had to put in a shut to stop the pressure and it was infected so they put in another one and he had a bleed on the brain. So survivor yes but quality of life not even.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-44194649460995985392013-08-16T16:31:22.524-04:002013-08-16T16:31:22.524-04:00The tears came as freely today as they did a year ...The tears came as freely today as they did a year ago. I miss your Noah posts and pictures. Super Noah touched my heart from a distance. He still does.donnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-32185460667977421622013-06-06T00:11:34.313-04:002013-06-06T00:11:34.313-04:00because a craniopharyngioma is so rare, not a lot ...because a craniopharyngioma is so rare, not a lot of docs have experience with them. i ended up in philadelphia,pa., with the absolute best neurosurgeon ever. look him up- dr. david andrews. i love him. tell your friend not to just settle for who is near him- get him to travel if he feels he needs more options. Terihttps://www.blogger.com/profile/12135355646863726339noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-16042655451819525562013-06-05T06:32:08.402-04:002013-06-05T06:32:08.402-04:00Came across your Blog by pure accident... have a f...Came across your Blog by pure accident... have a friend who has been diagnosed with stage 3 craniopharyngioma which is inoperable he is 41 :( what a nightmare getting informed about options... can you suggest anything please...we live in NZ. Thanks<br />Ann Anonymoushttps://www.blogger.com/profile/01086516854520358090noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-76866810801964546952013-06-04T18:07:27.926-04:002013-06-04T18:07:27.926-04:00Another great post, Ale! Re: Testosterone... will...Another great post, Ale! Re: Testosterone... will they try another method of delivery, or is the gel the only/most effective (though not very effective) way? Are you taking synthroid? I've "known" you this long yet I don't remember if you're on it or not. <br /><br />~Donnadonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-14819259577866289652013-06-04T14:29:09.212-04:002013-06-04T14:29:09.212-04:00so happy to have found your blog. am following! i ...so happy to have found your blog. am following! i know what you are going through with the diabetes insipidus. i had surgery for a craniopharyngioma in feb 2003. and had the DI. it was a nightmare. i was on 2 "snorts" a day and was ok. but! then i got down to one snort, then none! i no longer have DI! How great is that? i think it took 3 or 4 years- maybe even 5? for it to go away. but man, am i grateful! i never waited for my thirst to come, i just snorted in the mornings, and at bed time. it is so nice being able to talk to someone who gets it. i have been through so much- with my family, you can;t imagine. i know there are sites out there for support, but i don't want to hear anything negative. not keeping my head in the sand, but so far, i am good. my last mri in dec showed shrinkage- even still. so, i want to stay ignorant and happy.Terihttps://www.blogger.com/profile/12135355646863726339noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-78726141436489902832013-05-08T11:27:55.314-04:002013-05-08T11:27:55.314-04:00The year was 1996. The girls were 14 and 12. The...The year was 1996. The girls were 14 and 12. The limo was white. And we... we were in Los Angeles. It never occurred to us NOT to rent a limo to tour the city. Who on earth would rattle around Beverly Hills in a cab?? So, for a full day we had the pleasure of seeing all the nooks and crannies: big and small, rich and not so rich. We stopped at stop lights so my youngest daughter, Kailyn, could slowly roll down a side window to ask, in her best British accent, a neighboring red light waiter if he had any Gray Poupon. More fun was had THAT day in THAT limo than has ever been had before and since.donnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-83397881433502727382013-05-08T11:26:37.019-04:002013-05-08T11:26:37.019-04:00The year was 1996. The girls were 14 and 12. The...The year was 1996. The girls were 14 and 12. The limo was white. And we... we were in Los Angeles. It never occurred to us NOT to rent a limo to tour the city. Who on earth would rattle around Beverly Hills in a cab?? So, for a full day we had the pleasure of seeing all the nooks and crannies: big and small, rich and not so rich. We stopped at stop lights so my youngest daughter, Kailyn, could slowly roll down a side window to ask, in her best British accent, a neighboring red light waiter if he had any Gray Poupon. More fun was had THAT day in THAT limo than has ever been had before and since.donnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-81563890481338639352013-02-05T10:51:44.762-05:002013-02-05T10:51:44.762-05:00Sorry it took so long to notice this comment, Donn...Sorry it took so long to notice this comment, Donna. It's just a tiny dot, (yes, a bright white dot) but very small. In addition to tumor, it could also be part of the tissue used to plug the hole. In any case, it is completely inert by the way it looks the same from year to year.Alexander Millerhttps://www.blogger.com/profile/09502570406095911380noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-83310042783841729472012-12-15T11:21:48.167-05:002012-12-15T11:21:48.167-05:00What is the spot you speak of? Is it a bright spo...What is the spot you speak of? Is it a bright spot that shows up in the pituitary?donnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-76170660400085215902012-12-15T10:46:33.310-05:002012-12-15T10:46:33.310-05:00Wait... you could put your...
I guess women have...Wait... you could put your... <br /><br />I guess women have the same problem.<br /><br />Very happy all was clear. And, very impressed with your dignified and respectful treatment of a professional who probably has to deal with a bit of the opposite in these situations. <br /><br />Just a thought, now that she knows who you are and what you do, a long with your medical history, I'll bet she has googled you and is reading your blog right now. Another fan! ;-)<br /><br />As Always,<br />Donnadonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-79911693620440132092012-10-25T23:58:06.650-04:002012-10-25T23:58:06.650-04:00I AM A 30 YEAR OLD FEMALE, I WAS DIAGINOSED IN 200...I AM A 30 YEAR OLD FEMALE, I WAS DIAGINOSED IN 2006 AND HAD A VERY LARGE CRANIOPHARYNGIOMA TUMOR, I HAD IT REMOVED BUT IN 2009 IT RETURNED THIS TIME I HAD TO HAVE MY PITUITARY GLAND REMOVED. AFTER MY LAST SURGERY I STARTED TO HAVE PROBLEMS WALKING, SPEAKING, USING MY HANDS, AND HAVING SEZIOURS, IM AM ALSO ON APROX 6 DIFFERENT MEDS FOR THE REST OF MY LIFE I STILL HAVE TO HAVE MRI'S EVERY 6 MONTHS BOTH TUMORS I HAD REMOVED WERE APROX 5MM IN SIZE. AND SINCE IT WAS INTERTWIND WITH MY HAYPOTHELMUS THEY HAD TO LEAVE PART OF THE TUMOR. SO CHANCES OF IT RETURNING AGAIN WELL LETS JUST SAY IT SUCKS!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-56680853689346526552012-09-20T23:55:45.499-04:002012-09-20T23:55:45.499-04:00Oh Ale,
So glad you aren't dead. sheesh...wh...Oh Ale,<br /><br />So glad you aren't dead. sheesh...what an awful thought. This is really great news and I am very happy for you. Pamela Smitterhttp://www.pamelasmitter.comnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-54810966941427170662012-09-20T12:17:26.308-04:002012-09-20T12:17:26.308-04:00Boring is GREAT! Yes, do tinker with meds...it ca...Boring is GREAT! Yes, do tinker with meds...it can make a world of difference. I know it can be frustrating, as I see the same in Lyndsay, but it is SO much better than the alternative.<br /><br />So, pandiatonicism - In The WHITE Silence? I read that to mean... The bad stuff is quiet. Hope it stays that way.<br /><br />Always,<br />Ddonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-54137136581493991492012-08-10T16:18:58.542-04:002012-08-10T16:18:58.542-04:00Happened upon this searching for puppies that woul...Happened upon this searching for puppies that wouldn't wake up. It made me laugh out loud in places. Thank you! Good luck to you.<br />SamAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-28892182678146098722012-05-31T02:54:50.591-04:002012-05-31T02:54:50.591-04:00I'm so thankful for you, for your writing, for...I'm so thankful for you, for your writing, for your humour and wit. You may be a lot of things, Ale, but boring isn't one of them. I hope you have the healthiest and best summer yet. Well, not including the sand castle competition summers, because you just can't beat those.donnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-90293117453457309552012-05-08T14:44:46.048-04:002012-05-08T14:44:46.048-04:00Thank you for the tips. In general, I do eat very ...Thank you for the tips. In general, I do eat very well. I don't take the zinc supplements, but I will look into that. Also, I have never tried a kelp pill, but I do eat plenty of cilantro, red meat, etc. Thank you!Alexander Millerhttps://www.blogger.com/profile/09502570406095911380noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-90638600406534644782012-05-08T12:16:38.397-04:002012-05-08T12:16:38.397-04:00I experienced the same symptoms, and the problem w...I experienced the same symptoms, and the problem was metal toxicity. If you have metal amalgam fillings and grind your teeth, get a mouth guard asap and wear it religiously. (mercury, copper)<br />High copper lodes act as a stimulant on the mind = "mental storms". Copper toxicity can be due to a low zinc diet (vegetarian diet, cooking with copper cookware, the residual effect of meds, copper iuds, etc. Correct with zinc supplements (in moderation, and not with calcium, or just plenty of red meat) and lots of vitamin C.....and eat very well. <br />Zinc toxicity is another problem that some experience due to Fixodent, high zinc diet, etc. <br />Also it is good to eat lots of cilantro (binds to metal) with a kelp pill (iodine - moves metal out of the body) Metal also conflicts with iodine absorbtion = low thyroid levels.<br /><br />Just in case this may help......Good luck.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-66720997362878215982012-05-01T17:44:33.311-04:002012-05-01T17:44:33.311-04:00If the shots are what it takes to feel "right...If the shots are what it takes to feel "right" again...<br /><br />Hopefully your endo will have some good ideas. A year is long enough to "try this and then see." It's time to get it right however it has to be done. Cranios have enough to deal with, this doesn't need to be one of them.<br /><br />Looking forward to hearing what the endo suggests. Glad your free T4 was good!<br /><br />Ddonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-10305659166371103922012-04-27T21:45:54.409-04:002012-04-27T21:45:54.409-04:00I had one of these exact tumors. It's such an ...I had one of these exact tumors. It's such an extreme relieft to hear and see that things have cleared up, isnt it?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-68214348090822592762012-03-27T11:51:55.536-04:002012-03-27T11:51:55.536-04:00Oh Ale, at it again. When do you see your neuro a...Oh Ale, at it again. When do you see your neuro again? They just don't seem or act like migraine to me. They do seem like auras, however. The fact that your thought process is perfect, during a melt, and that you are able to complete the tasks you attempt are very good signs. Yet, the symptoms read like an aura BEFORE migraine, or an aura before an epileptic seizure. Some people only suffer with the aura and it doesn't progress further. Again, that your vision is completely normal and you don't have headache or vomiting are good indications that it is not tumor related (that is not to say it isn't a complication of the surgery FOR the tumor). Stupid brain melts!! Read up on Aura and see what you think.<br /><br />Always,<br />Donnadonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.comtag:blogger.com,1999:blog-8680575510661941908.post-18611897163329082752012-03-19T17:33:12.164-04:002012-03-19T17:33:12.164-04:00Sounds like the right choice to me. I completely ...Sounds like the right choice to me. I completely agree, it was a storm, you weathered it (thankfully) and now it has passed. Let me tell you, I searched and read and read and searched, but my gut just kept saying "electrical storm." Glad you are on the mend and hopefully will stay that way for awhile. Yet another lesson learned.<br /><br />Always,<br />Donnadonnab1https://www.blogger.com/profile/06303161998298452451noreply@blogger.com