Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 That's okay, I sure understand. I'm hyper, Graves. Then how come I feel like I should perpetually go back to bed, and how come I have blown up about thirty pounds in a few weeks, much of it fluid? I'd say something is wrong with the last lab tests and the tapazole dosing suggested after. I will call the endo MOnday. Keripes. I really am tiring of it all. Elaine How do they get deer to cross the road only at those yellow road signs? Hello Flutterbee On Saturday, July 3, 2004, you wrote > Hi... i am a little disappointed... went to the Enco yesterday, hoping to > receive something to help get this hyperT down some... my head, neck, jaw > are terrible and my blood pressure is 180/98 ... i will be having blood > work-ups and a 48 hr urinalysis... and ultra-sound of the thyroid... then go > back in 4 wks to see him again..... feel like i will blow-up before > then.... > just venting.... > Flutterbee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Hi Elaine, i think you have told me, but........ how long have you been hyper... and did you have graves after that, or before... my neck makes a horrible crunching noise .. is that all part of it...? Ida > That's okay, I sure understand. I'm hyper, Graves. Then > how come I feel like I should perpetually go back to bed, > and how come I have blown up about thirty pounds in a few > weeks, much of it fluid? I'd say something is wrong with > the last lab tests and the tapazole dosing suggested > after. > > I will call the endo MOnday. Keripes. I really am tiring > of it all. > > Elaine > > How do they get deer to cross the road only at those > yellow road signs? > > Hello Flutterbee > > On Saturday, July 3, 2004, you wrote > > > Hi... i am a little disappointed... went to the Enco yesterday, hoping to > > receive something to help get this hyperT down some... my head, neck, jaw > > are terrible and my blood pressure is 180/98 ... i will be having blood > > work-ups and a 48 hr urinalysis... and ultra-sound of the thyroid... then go > > back in 4 wks to see him again..... feel like i will blow-up before > > then.... > > > just venting.... > > Flutterbee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 This is my third bout with Graves. I have gone into remission twice. I never crunched. Is your thyroid noticeable in your neck? Mine does not seem to overly exhibit itself when labs indicate there are problems. Elaine Hello Flutterbee On Saturday, July 3, 2004, you wrote > Hi Elaine, i think you have told me, but........ how long have you > been hyper... and did you have graves after that, or before... my > neck makes a horrible crunching noise .. is that all part of it...? > Ida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi, Usually, doctors will prescribe beta blockers to relieve cardiac symptoms, and reduce blood pressure/heart rate before they make their final diagnosis. When symptoms are severe, anti-thyroid drugs are also started as long as the initial labs show hyperthyroidism. Best, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Deb, Please pay close attention to this message. First, I'm very sorry that you are so disappointed. We all hope to go in for that first mapping and to walk out the door hearing everything the world of sound has to offer. In most cases, that does not happen. Right now, you are taking baby steps. How many years has it been since you were able to hear much in that ear. Now you are training your brain. When one of our senses shuts down - that part of the brain becomes filled with the other senses. For you, the process of hearing is your brain being told to give me back my hearing space. Time and patience will help but don't put a lot of pressure on yourself. Let it happen at it's own pace. Be sure to go for your mapping tomorrow and let the audiologist do what needs to be done. I suspect that before long, everything will be just fine. Tonight - if you can stand to do it, listen very closely to the tapping of the keys on the computer. Walk on the floor and see if you can hear the footsteps. Turn on the water in the kitchen sink and see if you can hear that. Rustle paper or ring a bell if you have it. For every sound that you give yourself - write down exactly what it sounds like and take it to your mapping tomorrow. Do Not give up! One of the hardest parts of the activation took place today. You had to decide when you first heard the beeps and then the loudest comfortable level of the beeps. That's hard to do and sometimes takes a while to get accustomed to. I bet they sound different to you tomorrow. By the way - sound is a feeling so you are on the right track. How was your trip? Alice <Hi went for a hookup today and i am in a total silence... only feeling beeps Deb> -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.296 / Virus Database: 265.6.7 - Release Date: 12/30/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Deb, Congratulations on your hook up, even though it is disappointing to you. I don't know why you're not getting all that blanketing white noise like I started with, ask your audiologist tomorrow, why it is different for you. (I thought that every CI newbie got those white noise staticky noises to start with.) I catch myself getting frustrated that my progress in three weeks is not going as fast as I would like it to be, but I tell myself " live in the HERE and NOW " and just appreciate each sound as it occurs, and remind myself that I am like a newborn baby, learning to hear. I have to make those " coo-coos " and " giggles " and bang those pots and pans in the kitchen, swing a door back and forth, pee in the water to make all those noises, trying to make my cat to meow on command, and to relish each and every one sound... and the rest will follow in their own sweet time. activated 12/8 On Mon, 3 Jan 2005 17:50:08 -0700, Alice <justagram14@...> wrote: > > Deb, > > Please pay close attention to this message. First, I'm very sorry that you > are so disappointed. We all hope to go in for that first mapping and to > walk out the door hearing everything the world of sound has to offer. In > most cases, that does not happen. Right now, you are taking baby steps. > How many years has it been since you were able to hear much in that ear. > Now you are training your brain. When one of our senses shuts down - that > part of the brain becomes filled with the other senses. For you, the > process of hearing is your brain being told to give me back my hearing > space. Time and patience will help but don't put a lot of pressure on > yourself. Let it happen at it's own pace. Be sure to go for your mapping > tomorrow and let the audiologist do what needs to be done. I suspect that > before long, everything will be just fine. Tonight - if you can stand to do > it, listen very closely to the tapping of the keys on the computer. Walk on > the floor and see if you can hear the footsteps. Turn on the water in the > kitchen sink and see if you can hear that. Rustle paper or ring a bell if > you have it. For every sound that you give yourself - write down exactly > what it sounds like and take it to your mapping tomorrow. Do Not give up! > One of the hardest parts of the activation took place today. You had to > decide when you first heard the beeps and then the loudest comfortable level > of the beeps. That's hard to do and sometimes takes a while to get > accustomed to. I bet they sound different to you tomorrow. > > By the way - sound is a feeling so you are on the right track. > > How was your trip? > > Alice > > <Hi > went for a hookup today and i am in a total silence... only feeling > beeps Deb> > > -- > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.296 / Virus Database: 265.6.7 - Release Date: 12/30/2004 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Monday, November 13, 2006, 6:15:36 PM, you wrote: > I was banded 2 yrs ago in Sept. I have only lost 30lbs. It seems that > I can eat anything and slipped back into my old ways. I am sooo > discouraged. When I eat, usually it gets stuck at first, then it goes > through and I can eat whatever I want. Do I need another fill? I have You are " eating around the band " . Once something gets stuck YOU ARE DONE WITH THAT MEAL. PERIOD. END OF STORY. Yeah, that's tough, but among other things it will teach you to take VERY small bites, chew VERY well, and eat VERY slowly. > had 3 fills but just small ones. The doctor said I can still have > another but just a little. Help... If it is any consolation, many of us struggle with those habits for a long time. After over 3.5 years I still mess up on that on occasion. But if you really do what I say above, you'll eventually get it. Really. The band is working like it should, you're just not following the directions the band is giving you. dan -- Dan Lester, Boise, ID honu@... www.mylapband.tk Dr. Ortiz, Tijuana, 4/28/03 323/209/199 Age 63 The road goes on forever..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 HI all, I don't know if you recall that my husband was waiting for word on a clinical trial in Strong Memorial Hospital (Rochester, NY) for HuMax. We were literally out the door this morning to go up there (5 1/2 hour drive) to have the preliminary CT scan and Bone Marrow biopsy and our oncologist called and said that Rob is no longer a candidate for the clinical trial due to the plural infusion that he had done in January (the procedure where they removed the fluid from around his left lung and then put the talc in there to stop it from accumulating fluid again). This is something the drug company will not allow and therefore it disqualifies him. Needless to say we are very upset and discouraged and worried. Our local oncologist will call us on Wednesday with hopefully another plan, but options are getting more and more limited. Of course what's really needed is the bone marrow transplant, but a donor has not yet been located. So, we are thinking of holding another bone marrow drive in Corbin Kentucky, that's where 's mother's family is. Maybe we need the southern genes for this, who knows. Can't hurt, that's for sure. We're going to see if we can get something set up for mid summer so we can take our four kids with us and make it a little family trip, as we haven't been there for a visit in at least five years. We are both very upset, discouraged and worried. Prayers for another door to open would be helpful. If anyone has any suggestions, you know I'm open to hearing them. I will keep you updated, all the best, JudySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Judy - contact Dr. Furman in New York about the HUMAX. rrfman@... See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 In a message dated 5/22/2007 10:20:16 A.M. Eastern Daylight Time, jb50192@... writes: Judy - contact Dr. Furman in New York about the HUMAX. rrfman@... Will do , thanks! JudySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2007 Report Share Posted May 29, 2007 Dear Judy, I live in the western part of Ky and there is a man here who has CLL and he too is needing a bone marrow transplant. They have been having a bone marrow drive for him here. Have not heard if they found a match for him. I wonder if they keep all the records and if they may be of help to you here. I dont know how any of this works, but it would be wonderful if they would know if someone would match your husband. Re: Disappointed HI all, I don't know if you recall that my husband was waiting for word on a clinical trial in Strong Memorial Hospital (Rochester, NY) for HuMax. We were literally out the door this morning to go up there (5 1/2 hour drive) to have the preliminary CT scan and Bone Marrow biopsy and our oncologist called and said that Rob is no longer a candidate for the clinical trial due to the plural infusion that he had done in January (the procedure where they removed the fluid from around his left lung and then put the talc in there to stop it from accumulating fluid again). This is something the drug company will not allow and therefore it disqualifies him. Needless to say we are very upset and discouraged and worried. Our local oncologist will call us on Wednesday with hopefully another plan, but options are getting more and more limited. Of course what's really needed is the bone marrow transplant, but a donor has not yet been located. So, we are thinking of holding another bone marrow drive in Corbin Kentucky, that's where 's mother's family is. Maybe we need the southern genes for this, who knows. Can't hurt, that's for sure. We're going to see if we can get something set up for mid summer so we can take our four kids with us and make it a little family trip, as we haven't been there for a visit in at least five years. We are both very upset, discouraged and worried. Prayers for another door to open would be helpful. If anyone has any suggestions, you know I'm open to hearing them. I will keep you updated, all the best, Judy See what's free at AOL.com. No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 In a message dated 5/29/2007 1:06:00 P.M. Eastern Daylight Time, warner@... writes: Have not heard if they found a match for him. I wonder if they keep all the records and if they may be of help to you here. HI , It was so nice of you to contact me regarding the person in Ky. I appreciate that so much! Once someone is tested and put on the donor list, it's available to everyone who is doing the searches so yes, those people would possibly be a match as much as anyone else who is tested. From what I've learned, it's like finding a needle in a haystack. Frustrating for sure! But we are not giving up, we'll get as many people on that donor list as humanly possible and eventually someone is going to match, I am sure. Thank you again, JudySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Gavin is 9 months now and had his Hanger helmet for almost 6 weeks. We had an appointment yesterday and it was very disappointing, his head had not grown at all. The asymmetry had improved 1 more mm but that was it. His flat spot in on the upper back of his head, and I swear it has not changed one bit. I feel like I am doing this for nothing. I am making my baby wear this plastic helmet on his head in 90 degree weather for nothing. I can't even cuddle with him because he constantly hits me in the face with the helmet. The ortho said sometimes this happens and they don't go through a growing spurt for a period and there will be no change until the head grows. Has anyone had a similar experience? He also mentioned that could be in the helmet until age 2 if necessary..I can't imagine spending the next year and 3 months with him in this helmet. (mom to Gavin 9mons, Hanger helmet 6 weeks) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 The tech didn't need to load you down with the thought of another year and three months right now. How ineffective at keeping your morale up. I'm not positive, but I have not heard of a child this young staying in a band that long! The tech is most likely right though, your baby probably has just not had a growth spurt. But, cheer up! If that is the case, he should be headed for one VERY soon, I would imagine. Then you will see improvement! > From: kmariesears <karenm_sears@...> > Subject: Disappointed > Plagiocephaly > Date: Thursday, July 3, 2008, 12:08 PM > Gavin is 9 months now and had his Hanger helmet for almost 6 > weeks. We > had an appointment yesterday and it was very disappointing, > his head had > not grown at all. The asymmetry had improved 1 more mm but > that was it. > His flat spot in on the upper back of his head, and I swear > it has not > changed one bit. I feel like I am doing this for nothing. I > am making my > baby wear this plastic helmet on his head in 90 degree > weather for > nothing. I can't even cuddle with him because he > constantly hits me > in the face with the helmet. The ortho said sometimes this > happens and > they don't go through a growing spurt for a period and > there will be > no change until the head grows. Has anyone had a similar > experience? He > also mentioned that could be in the helmet until age 2 if > necessary..I > can't imagine spending the next year and 3 months with > him in this > helmet. > > > > (mom to Gavin 9mons, Hanger helmet 6 weeks) Quote Link to comment Share on other sites More sharing options...
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