Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hi! Welcome to the group . . . what should we call you? If you'll take a look at Link #5 in the Important Links section at the bottom of each message, you'll find some sample menus, called the Turtle Menus. They were originally developed for slow losers, but give a very good structure for anyone who needs to have some guidelines. They are based on induction level carbs and recommendations in Dr. Atkins book. Enjoy the list! Terry168/155.25/154 (minigoal)/ ? (To be determined) Visit my web page at www.dtnorth.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Welcome! We are most congenial here - ;-). If you are seeking a menu, there is a link at the top of each e-mail (#5) that provides great induction menus. Are you familiar w/ the Atkins plan? It is really different from low fat plans, so you might want to take some time to acquaint yourself w/ the basics. You can look over the other links provided and get a really good start. Best of luck and glad to have you here, Beth in TX icouldberiding wrote: <<I am new to the group. I went to the Yahoo Groups page and searched for a diet group and ya'll seemed the most congenial!>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2001 Report Share Posted September 25, 2001 , Nice to have you in our group. Atkins is really good and there are alot of good things to eat... Go buy his book or rent it at the Library, it will explain it all to you. Cindy Masters 285/258/150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 , It sounds like you have a strong will and a healthy attitude. Regards, > >Reply-To: NF2_Crew >To: " NF2 Crew " <NF2_Crew > >Subject: New Member >Date: Thu, 12 Sep 2002 11:11:43 -0700 > >Name: >Location: Oregon >email: rlsmith@... >Relationship: Patient >Why I'd like to join: > I found out I had NF2 in 1996. Since then I have had two >tumors removed from my head. I'm completly deaf now. I also have tumors >on my spine that cause me much pain > My son, who will be ten this friday also has NF2. So far >he has had no problems, just baby tumors. > I would like to join for the support and information. >I have been through alot and have learned how to live with >NF2. I would like to share what I have gotton out of this. >What NF2 has done to me has not been all bad. I have learned alot of >things that are positive. > Thank you very much, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 > I live in Columbus Ohio and I > have only found one physician that does UAE but that extreme pain > afterwards is not very appealling to me. Any suggestions? If you expect little pain after a myomectomy--you are sadly mistaken. You'll have a large incision across the lower part of your abdomen that takes a few weeks to completely heal. The UAE pain lasts for a few hours (or maybe a day or so in some cases) and is like having labor pains BUT it can be well controlled with IV medications AND oral meds. Oh yeah--the incisions for the UAE are about the size and width of papercuts and require no stitches and heal within a day or so. Many people are able to return to work within 2 weeks after a UAE--not likely with a myo. My IR had a patient have a UAE and 3 days later that patient ran in a 5K marathon. At 3 days post-op on a myo--you're just learning how to comfortably turn over in bed! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Welcome to the family. Yes it can get that bad, I am being tested for a communication device now... dale New member > > > Hello to everyone, > My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now the > drs have been dx me as having MND probably ALS. On march 3 I saw > another Dr at the ALS clinic at the Univ of Ky. He has now dx as PLS. > But he added: since my sx started in late 2002, 2003 cane, in 2004 > added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for power > chair next month, that my progression is happening faster than > average. And he noted that I do have some LMN involvement which does > hint at ALS, not enough to dx it, but does not necessarily mean it > will become. I have been researching on my own, and Edith suggested > this group (thanks Edith). I will be going to the UK als clinic > starting in april. Everything I have read so far indicaates that PLS > is about as complicated as ALS; sx can go fast/slow, etc. I do have a > question though (I haven't read this anywhere); if the > speech/swallowing get bad enough (or does it get bad enough)to ever > warrant a communication device or peg? Thanks again for listening > and I am sure there are just as many great people here as there are > at the lwals group. Its nice to meet you. > Kathy Ball > dx pls 3-3-05 > sx 2002 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi Kathy I live in Elkhorn City, Ky. which is eastern Ky. in the hills. Where do you live? I have been going to the als/pls clinic at UK, now at Cardinal Hill about 2 years . I have an appt. in April too, on the 4th. Maybe we will meet. The doctor over it is Kasarskis, he is very nice. Bobbi Woodard New member Hello to everyone, My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now the drs have been dx me as having MND probably ALS. On march 3 I saw another Dr at the ALS clinic at the Univ of Ky. He has now dx as PLS. But he added: since my sx started in late 2002, 2003 cane, in 2004 added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for power chair next month, that my progression is happening faster than average. And he noted that I do have some LMN involvement which does hint at ALS, not enough to dx it, but does not necessarily mean it will become. I have been researching on my own, and Edith suggested this group (thanks Edith). I will be going to the UK als clinic starting in april. Everything I have read so far indicaates that PLS is about as complicated as ALS; sx can go fast/slow, etc. I do have a question though (I haven't read this anywhere); if the speech/swallowing get bad enough (or does it get bad enough)to ever warrant a communication device or peg? Thanks again for listening and I am sure there are just as many great people here as there are at the lwals group. Its nice to meet you. Kathy Ball dx pls 3-3-05 sx 2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi Kathy, Welcome to our group. You are in the right place . I am 53yo and I live in New Jersey ,and I have PLS dx 2003. My symptoms have progressed fast. Started with tripping, right foot dragging, now both legs and right hand weakness, swallowing problems and speech problems starting. I went from cane,to forearm crutches, walker,rollater walker in house short distances, w/c for longer distances, recently power chair. I know there are people here that have communication devises but I don't think anyone has a peg tube,but I could be wrong. I'm sure others will reply on both questions. Nice to meet you......njjeannie New member > > > Hello to everyone, > My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now the > drs have been dx me as having MND probably ALS. On march 3 I saw > another Dr at the ALS clinic at the Univ of Ky. He has now dx as PLS. > But he added: since my sx started in late 2002, 2003 cane, in 2004 > added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for power > chair next month, that my progression is happening faster than > average. And he noted that I do have some LMN involvement which does > hint at ALS, not enough to dx it, but does not necessarily mean it > will become. I have been researching on my own, and Edith suggested > this group (thanks Edith). I will be going to the UK als clinic > starting in april. Everything I have read so far indicaates that PLS > is about as complicated as ALS; sx can go fast/slow, etc. I do have a > question though (I haven't read this anywhere); if the > speech/swallowing get bad enough (or does it get bad enough)to ever > warrant a communication device or peg? Thanks again for listening > and I am sure there are just as many great people here as there are > at the lwals group. Its nice to meet you. > Kathy Ball > dx pls 3-3-05 > sx 2002 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi Kathy and Welcome I'm 51 with possible ALS/clinical PLS. My symptoms began in 1999 with severe bulbar involvement which improves greatly. I thought I was home free for 3 years. Then my left leg started. I've learned more from this group than any of the 16 neuros I'm been to. We're a great bunch of people even if we are a little imperfect. I current live in WV but very soon - like 2 weeks soon - will be moving to Florida by myself. And yes this move is killing me physically. Eva on the move > > Hello to everyone, > My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now the > drs have been dx me as having MND probably ALS. On march 3 I saw > another Dr at the ALS clinic at the Univ of Ky. He has now dx as PLS. > But he added: since my sx started in late 2002, 2003 cane, in 2004 > added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for power > chair next month, that my progression is happening faster than > average. And he noted that I do have some LMN involvement which does > hint at ALS, not enough to dx it, but does not necessarily mean it > will become. I have been researching on my own, and Edith suggested > this group (thanks Edith). I will be going to the UK als clinic > starting in april. Everything I have read so far indicaates that PLS > is about as complicated as ALS; sx can go fast/slow, etc. I do have a > question though (I haven't read this anywhere); if the > speech/swallowing get bad enough (or does it get bad enough)to ever > warrant a communication device or peg? Thanks again for listening > and I am sure there are just as many great people here as there are > at the lwals group. Its nice to meet you. > Kathy Ball > dx pls 3-3-05 > sx 2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Welcome to our great, fantastic, loving, careing, ect group of friends. Ask away and we will do our best at helping out. Sandy in Oregon New member Hello to everyone, My name is Kathy and I live in Ky. I am 55 y/o. For 1 1/2 yrs now the drs have been dx me as having MND probably ALS. On march 3 I saw another Dr at the ALS clinic at the Univ of Ky. He has now dx as PLS. But he added: since my sx started in late 2002, 2003 cane, in 2004 added 2 afo's, bipap, p/t wc, 2005 walker and being fitted for power chair next month, that my progression is happening faster than average. And he noted that I do have some LMN involvement which does hint at ALS, not enough to dx it, but does not necessarily mean it will become. I have been researching on my own, and Edith suggested this group (thanks Edith). I will be going to the UK als clinic starting in april. Everything I have read so far indicaates that PLS is about as complicated as ALS; sx can go fast/slow, etc. I do have a question though (I haven't read this anywhere); if the speech/swallowing get bad enough (or does it get bad enough)to ever warrant a communication device or peg? Thanks again for listening and I am sure there are just as many great people here as there are at the lwals group. Its nice to meet you. Kathy Ball dx pls 3-3-05 sx 2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Hi Panic, No need to panic...we're here. I go to UCSF ALS Research and Treatment Center. I was diagnosed with PLS at about 50 but had symptoms a few years prior. During my search of neurologists, it was Dr. who told me that I didn't have ALS! Loved that man! Do you know , the clinical nurse? I think when he left UCSF he went to Forbes Norris. I miss him. I need to contact him and give information about PLS that he can hand out to newly diagnosed PLS patients. I gave UCSF the info and they made up a packet for their newly diagnosed PLSers. I encourage them to use me as a contact and I have heard from a few people over the last few years. HIPPA makes it difficult but at least they can give out my name. I live in Fremont and we had our first TeamWalk in Pleasanton last October and we'll have another either in October or September. I'm taking the liberty of forwarding your email to PLSers-NEWS because some people who are on NEWS are not on FRIENDS. Jeivan lives in SF, and is a physician at Oakland Children's Hospital, and she has PLS and also goes to UCSF. I think there are about 6 PLSers who go to UCSF that I know. Of course, if replies to PLSers-NEWS, you'd need to be also on that List or I could forward it to you since I am on both Lists (as well as the HSP List). As Flora mentioned, we have a foundation--the Spastic Paraplegia Foundation and we cover PLS and also HSP (Hereditary Spastic Paraplegia). This year we will be able to grant $500,000 in research grants. Last year we awarded 1 2-year grant for $90,000 for PLS and 1 2-year grant for $90,000 for HSP. Our world-wide community keeps growing and growing. We've had a couple of Connections (get togethers/meetings) here in Fremont. They have been in Fremont because that's where I live and I organized them. Anyone can organize one and people come! Right now I'm in Phoenix and one of the ladies here had a luncheon and there were 16 of us. It's great just to talk to people who know what we're talking about. We're here to go to Spring Training (go A's and Giants) and we came a day early so we could go to the luncheon! I'm on the Board of Directors of the SPF so if you have any questions about SPF that you can't find on our website, please don't hesitate to call or write to me. Gentner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 I found that the " Ear Gear " helped my son to keep them on. I dunno if it made them more comfortable or what, but it worked. www.gearforears.com They are nearly impossible to get off. And unlike the critter clips (which helped Ian snap his ear hooks) they attach to the hearing aid. So it keeps sweat off of them too. Tawnya Re: New Member Carolyn, I've been browsing through messages and recently found your posting. My son is now 3 years-old and has been wearing his aids since 3 months. I remember those early days of hearing aids. The first day he wore aids also corresponds with the first time he really laughed outloud. It was almost immediately after the audiologist put the aids in. What a joyful day! Anyways, we struggled with taking his hearing aids out constantly at first, and then again around 8 months old. The worst was when he put them in his mouth or would throw them in his food. I remember being so frustrated I ended up using about 50 pieces of scotch tape to adhere the aids to his head. It was an interesting fashion statement but that too did not last. I don't remember doing anything significant to make his aids stay on, but he eventually got used to them and relied on them (except again for about a month-long period of protest at 8 months old). I do use little strips of wig tape that I cut to fit his hearing aids. This helps to hold them to his head so they aren't flopping around when he's being active. I also found it reduces feedback. E-mail me if you have any questions about this. Take care, Walden 's mom > > Hello All,>>I'm new to the group as of today. I recently joined the LVAS (enlarged vestibular aqueduct syndrome) list serve. A mother on the group recommended I take a look at the Listen Up website. I was so excited to see that it was a site for parents only! >>> >I am a first time mom to the world's most beautiful happy precocious 4 month old baby boy (sorry all of you other moms he's taken the title.in my eyes of course) *smile* Wow, who knew that your heart could be so overwhelmed with love, joy, and protection until you're a parent! >>> >So along with freaking out about being a first time mom, Ozzie (my son) was diagnosed with LVAS when he was 3 months old. The result is moderate to severe hearing loss (sorta flat lined) in both ears. He began wearing his first pair of hearing aids on 12/21/05. Technology is amazing. The hearing molds were so tiny. He's growing so quickly we're already on our 2nd pair of molds with the third set of impressions made yesterday. Ozzie is a big boy...measuring and weighing in at around 6 months as opposed to his 4 months. Our audiologist says this is the first time that she has made 3 impressions in 30 days. >>> >This is an entirely new world for my husband and I, as we are not hearing impaired. As far as we know there aren't any relatives with hearing difficulties either. Of course I had to quiz my husband since he has " selective hearing " *smile.* I'm going to saunter my way through the archives for tidbits of applicable knowledge. I look forward to everyone's experiences and " been there done that.now do this " stories. I welcome any and all advice, suggestions, and directions especially from parents with kids in hearing aids as infants. You won't offend me! >>> >I am so happy to have been guided your way! >>Peace, Love & Harmony>>~Carolyn>>> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Great! There is Sally's store near my home. I'll pick some up tomorrow after his audiologist appt! Thank you so much. Peace, Love & Harmony to you ~Carolyn > I bought toupee tape at a Sally's Beauty Supply store. & nbsp; The little > packet was about $5, and had enough tape (when cut into little lengths > to fit tiny ears) for a lifetime! Edith > & nbsp; Re: Re: New Member > > > & nbsp; Hi , > & nbsp; Thank you so much for your reply!!! I didn't think of using tape > to hold & nbsp; the actual hearing aids to his head as opposed to the > mold in the & nbsp; ear...wonderful! Where might I purchase & quot;wig > tape & quot;...a wig shop? > > & nbsp; Thanks again for your experienced advice! > & nbsp; Peace, Love & amp; Harmony to you > & nbsp; ~Carolyn > > & nbsp; & gt; Carolyn, > & nbsp; & gt; I've been browsing through messages and recently found your > & nbsp; & gt; posting. & amp;nbsp; My son is now 3 years-old and has been > wearing his aids & nbsp; & gt; since 3 months. & amp;nbsp; I remember those > early days of hearing aids. & amp;nbsp; & nbsp; & gt; The & nbsp; first day he > wore aids also corresponds with the first time he & nbsp; & gt; really > laughed outloud. & amp;nbsp; It was almost immediately after the & nbsp; > & gt; audiologist put the aids in. & amp;nbsp; What a joyful day! & nbsp; > & gt; > & nbsp; & gt; Anyways, we struggled with taking his hearing aids > out & nbsp; & gt; constantly at first, and then again around 8 months > old. & amp;nbsp; The worst & nbsp; & gt; & nbsp; was when he put them in his > mouth or would throw them in his & nbsp; & gt; food. & amp;nbsp; & nbsp; I > remember being so frustrated I ended up using about 50 & nbsp; & gt; > pieces of & nbsp; scotch tape to adhere the aids to his head. & amp;nbsp; It > was an & nbsp; & gt; interesting & nbsp; fashion statement but that too did > not last. & amp;nbsp; I don't & nbsp; & gt; remember doing & nbsp; anything > significant to make his aids stay on, but he & nbsp; & gt; eventually > got & nbsp; used to them and relied on them (except again for about & nbsp; > & gt; a month-long & nbsp; period of protest at 8 months old). & amp;nbsp; I > do use little & nbsp; & gt; strips of wig & nbsp; tape that I cut to fit his > hearing aids. & amp;nbsp; This helps & nbsp; & gt; to hold them to & nbsp; his > head so they aren't flopping around when he's being & nbsp; & gt; > active. & amp;nbsp; I & nbsp; also found it reduces feedback. & nbsp; & gt; > & nbsp; & gt; E-mail me if you have any questions about this. > & nbsp; & gt; > & nbsp; & gt; Take care, > & nbsp; & gt; Walden > & nbsp; & gt; 's mom > & nbsp; & gt; & amp;gt; > & nbsp; & gt; & amp;gt; Hello All, & amp;gt; & amp;gt;I'm new to the group as > of today. I recently & nbsp; & gt; joined & nbsp; the LVAS (enlarged > vestibular aqueduct syndrome) list serve. A & nbsp; & gt; mother on the > group recommended I take a look at the Listen Up & nbsp; & gt; website. I > was so excited to see that it was a site for parents only! & nbsp; & gt; > & amp;gt; & amp;gt; & amp;gt; & amp;gt;I am a first time mom to the world's > most beautiful & nbsp; & gt; happy & nbsp; precocious 4 month old baby boy > (sorry all of you other moms he's & nbsp; & gt; & nbsp; taken the title.in > my eyes of course) *smile* Wow, who knew that & nbsp; & gt; your heart > could be so overwhelmed with love, joy, and protection & nbsp; until > & nbsp; & gt; you're a parent! & amp;gt; & amp;gt; & amp;gt; & amp;gt;So along > with freaking out about being & nbsp; & gt; a & nbsp; first time mom, Ozzie > (my son) was diagnosed with LVAS when he was 3 & nbsp; & gt; months old. > The result is moderate to severe hearing loss (sorta & nbsp; & gt; flat > lined) in both ears. He began wearing his first pair of hearing & nbsp; > & gt; aids on 12/21/05. Technology is amazing. The hearing molds were so > & nbsp; & gt; tiny. He's growing so quickly we're already on our 2nd pair > of molds & nbsp; & gt; with the third set of impressions made yesterday. > Ozzie is a big & nbsp; & gt; boy...measuring and weighing in at around 6 > months as opposed to his & nbsp; 4 & nbsp; & gt; months. Our audiologist > says this is the first time that she has & nbsp; made 3 & nbsp; & gt; > impressions in 30 days. & amp;gt; & amp;gt; & amp;gt; & amp;gt;This is an > entirely new world & nbsp; & gt; for my husband and I, as we are not > hearing impaired. As far as we & nbsp; know & nbsp; & gt; there aren't any > relatives with hearing difficulties either. Of & nbsp; course & nbsp; & gt; > I had to quiz my husband since he has & amp;quot;selective > hearing & amp;quot; & nbsp; & gt; *smile.* I'm going to saunter my way > through the archives for & nbsp; & gt; tidbits of applicable knowledge. I > look forward to everyone's & nbsp; & gt; experiences and & amp;quot;been > there done that.now do this & amp;quot; stories. I & nbsp; & gt; welcome any > and all advice, suggestions, and directions especially & nbsp; from & nbsp; > & gt; parents with kids in hearing aids as infants. You won't > offend & nbsp; me! & nbsp; & gt; & amp;gt; & amp;gt; & amp;gt; & amp;gt;I am so > happy to have been guided your way! & nbsp; & gt; & amp;gt; & amp;gt;Peace, > Love & amp;amp; & nbsp; > Harmony & amp;gt; & amp;gt;~Carolyn & amp;gt; & amp;gt; & amp;gt; & amp;gt; & amp;gt; > & nbsp; & gt; & amp;gt; > & nbsp; & gt; & amp;gt; > & nbsp; & gt; & amp;gt; > & nbsp; & gt; & amp;gt; [Non-text portions of this message have been > removed] & nbsp; & gt; & amp;gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; All messages posted to this list are private and > confidential. & amp;nbsp; & nbsp; & gt; Each post is the intellectual > property of the author and therefore & nbsp; & gt; subject to copyright > restrictions. > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; > & nbsp; & gt; & nbsp; & nbsp; & nbsp; & nbsp; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi there, Thank you so much for the information on the acronyms! It sure helps and of course is familiar once I see it :-) I wish I would have had a resource like this when my son was born 9 years ago. He was diagnosed at about 18 months but likely was born this way due to being 12 weeks premature. I now have 2 other children, one of whom is a 6 month old, they both hear fine but life is much busier and I have less time to spend on my older sons needs - So I'll be playing some major catch up since I've discovered this site :-) So nice to meet you! Kearns wrote: Hi Angie. I've been on this list for the past five years. My son is 5.5 years old. He was born deaf and got hearing aids at 3.5 months old. At 20 months he received a cochlear implant. He still wears his original hearing aid in the opposite ear. It was great to find this list when I was overwhelmed with the diagnosis and didn't know what to expect. I got a lot of welcome introductions from members in the beginning and learned a lot. Now five years into it I'm still learning a lot about technology, therapy, advocacy, law, and working with the school system. Another great thing is now I feel like I have something to contribute to other parents on the list. Welcome. already answered your question about TOD = Teacher of the Deaf. Here are a few others you're bound to see... HA, hearing aid CI, cochlear implant BTE, behind the ear (as in hearing aid) IFSP, Individual family service plan (for birth to 3 years) IEP, Individual Education plan EI, Early intervention HOH, hard of hearing SLP, speech language pathologist AVT, Auditory-verbal therapy K 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi Angie - Tom is a bit different in that he received his implant as an " older " kid - he's 13. He had a severe/profound loss all along that hadn't changed much and then the past year, I noticed a lot more " huhs " and " whats " and certainly compared to my younger son, you could tell he wasn't hearing as was. I mentioned it to our audiologist and we decided to go through the doctor visits to see if Tom was eligible and during that period of time, we could then make our decision. Tom was easily eligible - he'd done very well with his hearing aids and the structure of his ears are normal and his hearing loss qualified him. Most importantly, he really wanted to have the implant done and was committed to the hard work we knew would lie ahead. On his last hearing test, his word recognition scores had dropped from about 50% to 4% - pretty horrible - so for me the decision was relatively easy. He had the implant surgery Nov. 16 - longest day of my life! - and was activated December 12. It was interesting Tom's comments on activation. At first he said that everyone sounded the same which I understand is typical, then he said that everyone he knows sounded like they were going through puberty (I reminded him that everyone he knows IS going through puberty LOL). At 3 months post-activation, Tom's word recognition scores are 96% - isn't that amazing? And most of all, he loves it. He said it's the best thing he's ever done. As I understand it, the criteria for candidacy seem to be (a) the degree of hearing loss; ( structure of your ears and if the bones and such are normal; © supports in place after the implant which I personally think is probably the most important thing. Tom's having to learn a totally different way of hearing so that at times has been challenging. But he loves his implant. He continues wearing his hearing aid in his unimplanted ear. We were having trouble with the earmold of that hearing aid the other day so he went to school with just the implant and did miss the hearing aid. I understand other folks have different experiences with this. We felt that it wouldn't hurt to go through the workups prior to Tom having the implant. That included visits with a social worker, a developmental pediatrician, a neuropsychologist as well as our audiologist and ENT. We figured it couldn't hurt going through this process and it ultimately would give us better information and answers (which it did). Every child is different but for Tom at this point in his life, we feel like it was the right thing to do. Take care! Barbara Angie Sauer wrote: > Hi there Barbara, > > Would you mind sharing with me why you decided on cochlear implants? I only knew one child who got them and he didn't benefit from the hearing aids. Did your one boy ever benefit from hearing aids? I'm curious because my son's loss is pretty severe but still wears the aids and seems to function quite well with them - I think he's also a pretty swift lip reader because sometimes they won't be working and he'll never tell you and it'll take a long time to notice it myself. I don't know what it takes to be a candidate for an implant and it seems from what I've read, your hearing is almost better w/the implant than w/aids - is that true? > > Thank you! > > Barbara Mellert wrote: > Hi Angie - adding to the welcomes! I'm Barbara, mom to Tom (13) and Sam > (11). Both my boys are deaf. Tom recently received a cochlear implant > (4 months ago); Sam wears two hearing aids but is scheduled for implant > surgery May 10. > > Please ask away - we all were where you are at one time or another and > always happy to answer questions. > > Barbara > > angierenae2001 wrote: > >> Hi again, >> >> Thank you for the warm welcome. This does sound like it will be a >> good and helpful group of people to connect with. Forgive me if I am >> a little ignorant on the acronyms. Can you tell me what TOD means? >> I bet it'll be something really basic that'll make me look ridiculous >> so just forgive me in advance for that :-) >> >> >> >> >>> Welcome Angie, >>> >>> I'm Jill, mom to 2 kids. Our son, Ian, is 15 and mainstreamed as a >>> >>> >> sophomore >> >> >>> in our local high school. Ian is aided for a progressive bilateral >>> conductive loss currently in the moderate range. He has an Fm >>> >>> >> system at school as well >> >> >>> a TOD and other services appropriate for his needs. Ian was >>> >>> >> diagnosed very >> >> >>> late (7-years-old) when he was in 2nd grade. Our other child is >>> >>> >> , a >> >> >>> 12-year-old in middle schooler with no hearing loss. In fact, no >>> >>> >> one in our family >> >> >>> or extended families has a similar hearing loss. A great aunt lost >>> >>> >> her >> >> >>> hearing due to scarlet fever as a child, and grandparents wear >>> >>> >> aids now, but >> >> >>> that's due to the usual age issues. >>> >>> We were not lucky enough to have an EI program or infant screening >>> >>> >> identify >> >> >>> Ian's loss. We're not even sure when his loss began. So, we learned >>> >>> >> everything >> >> >>> from lists like this and through the kindness of total strangers. >>> >>> You'll find this place top be wonderful. Parents and caregivers >>> >>> >> supporting >> >> >>> each other and sharing ideas, resources and the occasional bragging >>> >>> >> or whining >> >> >>> that we all need to do now and then. What's really great is the >>> >>> >> attitude here >> >> >>> is that the " right answer " is what works for your child. I'll >>> >>> >> share what's >> >> >>> worked for Ian, but that doesn't mean it'll work for anyone else. >>> >>> >> But people >> >> >>> here are more than willing to share their ideas and their >>> >>> >> resources, and by >> >> >>> reading about those we get ideas about what may work for our own >>> >>> >> kids. It's a >> >> >>> great place. >>> >>> There are no protocols about joining the ongoing discussions. Just >>> >>> >> jump in >> >> >>> with your experiences or even to ask a question. We just always >>> >>> >> try to >> >> >>> remember to respect each other's choices and opinions. You'll >>> >>> >> rarely, if ever, find >> >> >>> a flame war going on here ... which is a wonderful change from >>> >>> >> some other >> >> >>> lists. >>> >>> Welcome again, >>> Jill >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Hi Jackie and welcome to the group. I'm Judy and I'm in Texas. I can't believe that you have to pay for your test results, I hope it's not much. Your lab numbers are helpful, so post them when you get them if you want our interpretation. What medication and dose did the doc start you on? As for the popcorn, it's just way high on the glycemic index list and a no-no for anyone trying to do low carb. If you don't have a carb/weight problem, then it's full of fiber, not to mention yummy. I can't include things like that anymore. We're here for you, so ask away... Judy Hi, I want to introduce myself. My name is Jackie and I'm new here. I have just recently been diagnosed with low thyroid, I don't have my numbers as "they don't do that" (give copies of test results). I have to send in paperwork, which I am in the process of doing, with payment, to get copies. I have many questions, but right now, I am curious, what is wrong (or right) about popcorn? Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Hi Judy,Thank you so much for the warm welcome :)I agree it is sad that I have to go through hoops and paperwork and pay for my test results when the nurse stands 3 feet across the counter with them and has a copier not 5 feet away. Oh well, the "system".I will definitely post them when I get them. I'm waiting until after an MRI I have scheduled for the 31st of August. Not sure if it's related at all to my thyroid, but I get gallbladder type "attacks" that are a ten on the pain scale. Ultrasound showed no stones, so off to do an MRI.Okay, he prescribed Armor Thyroid 60mg tabs 1 tab per day.I actually talked him into checking TSH, T-3 and T-4 he plans on re-testing after 6 weeks (I've beenon the Rx for two weeks, no sign of change).What tests should I have him do also? I have been reading about Adrenal, Iodine, cholesterol, etc....I am heavier than I should be, so maybe I should lose the popcorn too? I was always looking at it as fiber,but I'm sure I can get that other ways Jackie in CaliforniaHi Jackie and welcome to the group. I'm Judy and I'm in Texas. I can't believe that you have to pay for your test results, I hope it's not much. Your lab numbers are helpful, so post them when you get them if you want our interpretation. What medication and dose did the doc start you on? As for the popcorn, it's just way high on the glycemic index list and a no-no for anyone trying to do low carb. If you don't have a carb/weight problem, then it's full of fiber, not to mention yummy. I can't include things like that anymore. We're here for you, so ask away... Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 Hello All, I'm a mother of three 3,2,5 month's and up and down... My hypo medication was just adjusted and I have to admit I'm in the fog about all of this. I'm to tired all the time (usually lack of sleep) from new born and nursing. Anyways the reason I'm writing is I need help to understand what excatly is Hypothroid (again I've been to tire maybe lazy to do the research it's just hard to get to the computer) time? what is that. Here is some more info my TSH again I don't know what that is all about is very high 9.84. I know the norm is 5.50 .. My medication is changed as of today. Help me to learn a little more with out searching for hours. Please!!! PATTY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 Hi Patty and welcome! What hypo medication are you on and what is the dose that you started on and raised to today? TSH is thyroid stimulating hormone and is generated by the pituitary gland to signal the thyroid to secrete thyroid hormones. The top range often used is 5.50, but most of us agree that it should be under 2 and in some cases it should be suppressed near zero. If you don't have antibodies, then I would aim (over time) to get it between 1 and 2. Mine is currently 1.18 and I'm still tired, but that is often food/exercise related. 9.84 is definitely high, but certainly managable as you don't have as far to go as you might think. Mine went from 62.0 to 1.18 on 100mcg synthetic T4 (like Synthroid but different brand). Hypothyroid comes in many flavors and we would need more test results to tell which one you have. Mine is your basic run of the mill underactive thyroid, meaning that it works somewhat, but cannot produce an adaquate amount and so I have to supplement with the medication. It would be best for you to try to get a Free T3 and Free T4 test along with your TSH next time they check it. Your symptoms will correlate more to the levels of those two hormones than they will to the TSH. TSH can have some value (especially when it's high), but it's very limited otherwise. As far as reading and research, you can do as much or as little as you like. I lived with it for 30 years without thinking about it too much and I felt well most of the time. In the last couple of years, the fatigue and weight problems have really settled in and so I've started reading some more. Ask whatever questions that you have and the folks will answer what they can... Judy My hypo medication was just adjusted and I have to admit I'm in the fog about all of this. I'm to tired all the time (usually lack of sleep) from new born and nursing. Anyways the reason I'm writing is I need help to understand what excatly is Hypothroid (again I've been to tire maybe lazy to do the research it's just hard to get to the computer) time? what is that. Here is some more info my TSH again I don't know what that is all about is very high 9.84. I know the norm is 5.50 .. My medication is changed as of today. Help me to learn a little more with out searching for hours. Please!!! All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2007 Report Share Posted September 10, 2007 , First off, this is NOT your fault. Many of us are still trying to figure out why we ended up with something like this. I would suggest that you stop trying to have intercourse all together for now. You are young, there will be plenty of time. There are many other ways to be sexual and intimate with your husband that does not require intercourse. By continuing to try, you are just going to aggravate the nerves that are already wound-for- sound. You were lucky to have found a doc that even recognizes this condition in such a short amount of time. Yes it's depressing, but you can get through it. Don't try to live up to 'what you should be'. Just try to take one day at a time. Find joy in the simple things. Dawn Zimbro wrote: > > Hi, My name is , > I'm 23 years old and have been married since May. I have just recently been diagnosed with a possible vulvar vestibulitis. I have my apt with a specialist in late October. I was wondering if anyone has any suggestions to reduce pain during sex that i can try until i see the gynourologist. My husband and I almost never have it at all because it is so painfull for me, and it is really starting to take a toll on my marriage. I get really depressed that its all my fault and that I'm not living up to what i should be. Thank You > > > Suprise AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 > I have test results but no RT3 test done. My ferritin was checked but was only told it was normal. I did request the result but it wasn't sent. TSH 0.66, FT4 15 (9 -21) FT3 1.5 (0.9 -2.5) > I did a saliva adrenal stress profile at the end of January this year. My last sample was taken at 9.30pm as I had a really bad reaction to not having any coffee during the test - really bad head and felt sick for most of the day so couldn't last any longer. How much coffee do you normally drink in a day? > Cortisol levels: > Sample 1: 15.7 (12-22), S2: 3.6 ((5.0-9.0), S3: 5.0 (3.0-7.0), S4: 22.4 (1.0-3.0) Normal, thought the first in the morning could be higher. > DHEA levels: am: 1.32, pm: 1.07 (0.30-1.00) This is a bit high. You may be having trouble converting DHEA. > Adrenal stress stage - Alarm stage Meaning that your cortisol levels don't increase adequately to a challenge? Did you have a challenge test? > Comment on last sample level - suggestive of malfunctioning of the hypothalmic adrenal axis feedback system. Associated with REM sleep disturbance and depression. See sleep apnea. > DHEA levels - elevated, reflecting elevated ACTH with an imbalanced response from the adrenals, could be due to an inappropriate DHEA response. Sleep apnea would explain this quite well. > I had a quick look at the FAQ's but will have a better look. I still have my thyroid, was told I had primary hypothyroidism. At the moment I'm on 175mcgrms thyroxine and taking a multi vit and mineral, selenium, vit D3( was below range in this) and vitaminC. > I will have a read at Dr Rind method and start this. > Alan, I have done a gluten free diet/detox. this was about 4 years ago and I kept on it for 6 weeks. I did the diet because my energy, stamina and fatigue were so poor. the difference wasn't huge. I keep my gluten intake under control although,especially during the day as it does make me feel even more tired. Most days I have none. Also, I don't really have joint pain. I get muscle aches when very fatigued. You sound as if you might have early stage fibromyalgia. In fact, many of your symptoms look like T3 supplementation would help you. But, we won't know until your RT3 is measured. In order for a gluten test to work, you must avoid all gluten during the test period. If you limited your diet to just meat, fish, and vegetables, then you probably don't have a gluten issue. If you ate out or had any packaged foods however, you may have been glutened. It takes an experienced hand to know what is really gluten free. > About RT3 test, is it done by the NHS? Would I have to wait for my endo appointment or would my GP be able to do the FT3 and RT3? Anyone in the NHS should be able to order the appropriate tests. Alan Quote Link to comment Share on other sites More sharing options...
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