Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 -Welcome Beth!! CT is usually pretty time sensitive. Have you tried to get on their cancellation list yet? I know I got a " squeezed in " casting appointment (after we got the Rx and approval) because I called back a few times in dire straights. Perhaps though the NC office is booked solid. It happens. Anyway, good luck! Crista-Grayslake, IL D-11 mo old brachy DOCgrad -- In Plagiocephaly , " egmyrek " <egmyrek@h...> wrote: > Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC) > Mommy of Braden (7 months) > Plagio/Bracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Hi Beth and welcome to the group. I am still sort of a new-be too. I think I have been posting for a few months and every one is so nice and they have lots of great advice to give. mom to S. (7 1/2 mos.), CA -Optic Nerve Hypoplasia -Central Hypotonia. -Brachy/Rt side Plagio soon to be DOCbanded. -mild Torticollis (resolved) > Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC) > Mommy of Braden (7 months) > Plagio/Bracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Hello and welcome Beth! You know, I don't realy " get " that about CT having to wait for ins. If a parent is willing to pay out of pocket why couldn't they just do the darn cast and wait for the ins. decision (I mean if it is OK with the parent, that is). I'm sorry to hear that you have to go thru this therapy but it really is not as bad as it seems. Braden is at such a good age and will really benefit in such a short time. I am actually excited for you and am glad to hear that you have the courage to get through this. I could get long and rambly so I'll just stop here. Let us know if you have any questions. Sue Colin F. almost 1 yr.old, brachy, rt plagio STARband grad yesterday! 6/29-9/15/04 (11 wks) Buffalo, NY > Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC) > Mommy of Braden (7 months) > Plagio/Bracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Beth, Welcome to the group. I understand your frustration with not being able to cast until CT hears back from the insurance company. It took 2 months from the time I went to CT for an evaluation to the day my received her band. The insurance approved it out of network within one week and then it took 4 weeks for CT and my insurance company to work out a deal to be in network. I had to wait one more week for a casting appt and then 2 more weeks to get the band. was 6 1/4 months when we finally got the band. I know it seems like a long time and you feel like you are wasting precious time. However, you are definitely on the right track and Braden will have his band before you know it. Good Luck to you both and please keep us posted on his casting, etc. I live in Raleigh, NC and go to CT's Durham location. Have you worked with at CT in Charlotte? She currently is going to Durham Mon -Wed to help out until that office closes in January 2005. She is very nice! Dianna Mom to DOC Band 9/13 plagio/brachy In Plagiocephaly , " egmyrek " <egmyrek@h...> wrote: > Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC) > Mommy of Braden (7 months) > Plagio/Bracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Crista! I am on the cancellation list, and they know how badly I want to get this started. Hopefully I'll get in. I think the problem is that they usually have 4 people who do the casting, but they only have 2 next week. I'm keeping my fingers crossed though. I'd love to get in today and get the castingh over with. Beth (Charlotte, NC) Mommy of Braden (7 months) Plagio/Bracy >From: " bobobear4u2000 " <datadatum@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Thu, 16 Sep 2004 16:46:43 -0000 > >-Welcome Beth!! > >CT is usually pretty time sensitive. Have you tried to get on their >cancellation list yet? I know I got a " squeezed in " casting >appointment (after we got the Rx and approval) because I called back >a few times in dire straights. Perhaps though the NC office is booked >solid. It happens. Anyway, good luck! > > >Crista-Grayslake, IL > D-11 mo old brachy DOCgrad > > > > > -- In Plagiocephaly , " egmyrek " <egmyrek@h...> wrote: > > Hi everybody. I'm new to the group and I wanted to introduce > > myself. My son, Braden, was diagnosed two weeks ago with a > > combination of plagiocelpahy/bracycephaly. I was devastated > > (although I knew in my heart that this was a problem, which is why >I > > took him to CT to begin with). I am on an emotional roller coaster > > already. Its taken this past two weeks to get anywhere with > > insurance. CT would not cast him until we received word back from > > United Healthcare. Now we have to wait another week for an > > appointment with CT to get him casted, and he won't have his band > > until October 8. This seems terribly long to me since this is such > > a time sensitive problem and I am so ready to tackle this problem > > and get it over with. Anyway, I need to stop here before I start > > rambling! I'm so glad you are all here. I can see that this group > > is going to make this experience much easier for us! Thanks! > > > > Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Bracy > _________________________________________________________________ On the road to retirement? Check out MSN Life Events for advice on how to get there! http://lifeevents.msn.com/category.aspx?cid=Retirement Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Dianna, I does seem like we are wasting time. Especially since he is a little older and I wish we had done this sooner. We waited because his pediatrician kept telling me his head would round back out. Also, it seems like this horrible black cloud on the horizon, and I just want to get it over with for him. From reading everybody's posts, it seems like its not going to be as bad as I envision, but I guess I won't really believe that until I see it. I'm glad to hear that is nice. She is the one who'll be casting Braden and fitting his band. Is she the one you've worked with? Do you think she'll do a good job with this? Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Brachy >From: " dlhickey2000 " <dlhickey2000@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Fri, 17 Sep 2004 05:04:15 -0000 > >Beth, > >Welcome to the group. I understand your frustration with not being >able to cast until CT hears back from the insurance company. It >took 2 months from the time I went to CT for an evaluation to the >day my received her band. The insurance approved it out >of network within one week and then it took 4 weeks for CT and my >insurance company to work out a deal to be in network. I had to >wait one more week for a casting appt and then 2 more weeks to get >the band. was 6 1/4 months when we finally got the band. >I know it seems like a long time and you feel like you are wasting >precious time. However, you are definitely on the right track and >Braden will have his band before you know it. Good Luck to you both >and please keep us posted on his casting, etc. > >I live in Raleigh, NC and go to CT's Durham location. Have you >worked with at CT in Charlotte? She currently is going to >Durham Mon -Wed to help out until that office closes in January >2005. She is very nice! > >Dianna >Mom to >DOC Band 9/13 >plagio/brachy > > >In Plagiocephaly , " egmyrek " <egmyrek@h...> wrote: > > Hi everybody. I'm new to the group and I wanted to introduce > > myself. My son, Braden, was diagnosed two weeks ago with a > > combination of plagiocelpahy/bracycephaly. I was devastated > > (although I knew in my heart that this was a problem, which is why >I > > took him to CT to begin with). I am on an emotional roller >coaster > > already. Its taken this past two weeks to get anywhere with > > insurance. CT would not cast him until we received word back from > > United Healthcare. Now we have to wait another week for an > > appointment with CT to get him casted, and he won't have his band > > until October 8. This seems terribly long to me since this is >such > > a time sensitive problem and I am so ready to tackle this problem > > and get it over with. Anyway, I need to stop here before I start > > rambling! I'm so glad you are all here. I can see that this >group > > is going to make this experience much easier for us! Thanks! > > > > Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Bracy > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Sue, Thanks for your support and words of encouragement. I truly appreciate it. I guess I believe that when Braden is older and has a nice round head it will all be worth it, and he will be glad that we followed through with the band. I am dreading it so much, but, from what everyone says, it will bother me a lot more than it will bother him. I sure hope that's true! Thanks so much Sue. Beth (Charlotte, NC) Mommy of Braden (7 months) Plagio/Brachy >From: " sueandcolin2004 " <justsue5@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Thu, 16 Sep 2004 17:19:51 -0000 > >Hello and welcome Beth! > >You know, I don't realy " get " that about CT having to wait for ins. >If a parent is willing to pay out of pocket why couldn't they just do >the darn cast and wait for the ins. decision (I mean if it is OK with >the parent, that is). I'm sorry to hear that you have to go thru >this therapy but it really is not as bad as it seems. Braden is at >such a good age and will really benefit in such a short time. I am >actually excited for you and am glad to hear that you have the >courage to get through this. I could get long and rambly so I'll >just stop here. Let us know if you have any questions. > >Sue >Colin F. almost 1 yr.old, brachy, rt plagio >STARband grad yesterday! 6/29-9/15/04 (11 wks) >Buffalo, NY > > > > > Hi everybody. I'm new to the group and I wanted to introduce > > myself. My son, Braden, was diagnosed two weeks ago with a > > combination of plagiocelpahy/bracycephaly. I was devastated > > (although I knew in my heart that this was a problem, which is why >I > > took him to CT to begin with). I am on an emotional roller coaster > > already. Its taken this past two weeks to get anywhere with > > insurance. CT would not cast him until we received word back from > > United Healthcare. Now we have to wait another week for an > > appointment with CT to get him casted, and he won't have his band > > until October 8. This seems terribly long to me since this is such > > a time sensitive problem and I am so ready to tackle this problem > > and get it over with. Anyway, I need to stop here before I start > > rambling! I'm so glad you are all here. I can see that this group > > is going to make this experience much easier for us! Thanks! > > > > Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Bracy > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Beth, Welcome to the group! Sorry to hear about the delay in Braden's treatment. The problem often is that if you dont' wait to hear from your insurance before proceeding with the casting is that you then forfeit your right to appeal. You could check into it to be sure. If you are willing to forfeit it and it doesn't matter if it is denied, than I don't see how CT could make you wait. Let us know what happens! , mom to Hannah, DOCgrad 7/29 Cape Cod, Ma > Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC) > Mommy of Braden (7 months) > Plagio/Bracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Sandy: Willow is adorable! does she mind her band much? I love the Strawberry Shortcake stickers! I posted a few pictures of Braden. Thanks so much for your support and encouragement! Beth >From: " Sandy " <samipa74@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Thu, 16 Sep 2004 16:45:27 -0000 > >Hello Beth >Welcome to the group. I'm glad things are rolling for Braden. He is >at a great age for treatment, so even though Oct 8th seems far away, >it will be here before you know it. Can you post some pics of >Braden. We love cutie pics around here >Sandy Willow's Mom > > > > Hi everybody. I'm new to the group and I wanted to introduce > > myself. My son, Braden, was diagnosed two weeks ago with a > > combination of plagiocelpahy/bracycephaly. I was devastated > > (although I knew in my heart that this was a problem, which is why >I > > took him to CT to begin with). I am on an emotional roller coaster > > already. Its taken this past two weeks to get anywhere with > > insurance. CT would not cast him until we received word back from > > United Healthcare. Now we have to wait another week for an > > appointment with CT to get him casted, and he won't have his band > > until October 8. This seems terribly long to me since this is such > > a time sensitive problem and I am so ready to tackle this problem > > and get it over with. Anyway, I need to stop here before I start > > rambling! I'm so glad you are all here. I can see that this group > > is going to make this experience much easier for us! Thanks! > > > > Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Bracy > _________________________________________________________________ Get ready for school! Find articles, homework help and more in the Back to School Guide! http://special.msn.com/network/04backtoschool.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi . United Healthcare approved the band on Wednesday. Now we are just waiting to get into CT for his casting appointment. Its scheduled for a week from today. I'm hoping they have a cancellation and call me though. Thanks ! Beth -- Charlotte, NC Braden's Mom Plagio/brachy >From: " " <sarahhollis@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Fri, 17 Sep 2004 15:23:51 -0000 > >Hi Beth, >Welcome to the group! Sorry to hear about the delay in Braden's >treatment. The problem often is that if you dont' wait to hear from >your insurance before proceeding with the casting is that you then >forfeit your right to appeal. You could check into it to be sure. >If you are willing to forfeit it and it doesn't matter if it is >denied, than I don't see how CT could make you wait. Let us know >what happens! >, mom to Hannah, DOCgrad 7/29 >Cape Cod, Ma > > > Hi everybody. I'm new to the group and I wanted to introduce > > myself. My son, Braden, was diagnosed two weeks ago with a > > combination of plagiocelpahy/bracycephaly. I was devastated > > (although I knew in my heart that this was a problem, which is why >I > > took him to CT to begin with). I am on an emotional roller >coaster > > already. Its taken this past two weeks to get anywhere with > > insurance. CT would not cast him until we received word back from > > United Healthcare. Now we have to wait another week for an > > appointment with CT to get him casted, and he won't have his band > > until October 8. This seems terribly long to me since this is >such > > a time sensitive problem and I am so ready to tackle this problem > > and get it over with. Anyway, I need to stop here before I start > > rambling! I'm so glad you are all here. I can see that this >group > > is going to make this experience much easier for us! Thanks! > > > > Beth (Charlotte, NC) > > Mommy of Braden (7 months) > > Plagio/Bracy > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Beth, Welcome to the group. You are in good hands with the Charlotte office (we went there - can ya tell? ) It took us a while to get the whole process rolling too. We had our first visit 9/8/03 and na wasn't in her band until 10/27. Our ped office kept loosing the paperwork - ugh!!! Thanks, mom to na DOC Grad Tort Resolved SC www.thefilyaws.comegmyrek <egmyrek@...> wrote: Hi everybody. I'm new to the group and I wanted to introduce myself. My son, Braden, was diagnosed two weeks ago with a combination of plagiocelpahy/bracycephaly. I was devastated (although I knew in my heart that this was a problem, which is why I took him to CT to begin with). I am on an emotional roller coaster already. Its taken this past two weeks to get anywhere with insurance. CT would not cast him until we received word back from United Healthcare. Now we have to wait another week for an appointment with CT to get him casted, and he won't have his band until October 8. This seems terribly long to me since this is such a time sensitive problem and I am so ready to tackle this problem and get it over with. Anyway, I need to stop here before I start rambling! I'm so glad you are all here. I can see that this group is going to make this experience much easier for us! Thanks! Beth (Charlotte, NC)Mommy of Braden (7 months)Plagio/Bracy For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Sue, They like to wait for insurance because even if insurance is going to deny if you go ahead first you have no options for appeal (depends on insurance). Does that make sense? It's one of their company policies and it seems to work for them. I know you;re not getting mad at CT just frustrated with the insurance folks that take 3 weeks. ugh! Thanks, mom to na DOC Grad Tort Resolved SC www.thefilyaws.comsueandcolin2004 <justsue5@...> wrote: Hello and welcome Beth!You know, I don't realy "get" that about CT having to wait for ins. If a parent is willing to pay out of pocket why couldn't they just do the darn cast and wait for the ins. decision (I mean if it is OK with the parent, that is). I'm sorry to hear that you have to go thru this therapy but it really is not as bad as it seems. Braden is at such a good age and will really benefit in such a short time. I am actually excited for you and am glad to hear that you have the courage to get through this. I could get long and rambly so I'll just stop here. Let us know if you have any questions.SueColin F. almost 1 yr.old, brachy, rt plagioSTARband grad yesterday! 6/29-9/15/04 (11 wks)Buffalo, NY> Hi everybody. I'm new to the group and I wanted to introduce > myself. My son, Braden, was diagnosed two weeks ago with a > combination of plagiocelpahy/bracycephaly. I was devastated > (although I knew in my heart that this was a problem, which is why I > took him to CT to begin with). I am on an emotional roller coaster > already. Its taken this past two weeks to get anywhere with > insurance. CT would not cast him until we received word back from > United Healthcare. Now we have to wait another week for an > appointment with CT to get him casted, and he won't have his band > until October 8. This seems terribly long to me since this is such > a time sensitive problem and I am so ready to tackle this problem > and get it over with. Anyway, I need to stop here before I start > rambling! I'm so glad you are all here. I can see that this group > is going to make this experience much easier for us! Thanks! > > Beth (Charlotte, NC)> Mommy of Braden (7 months)> Plagio/BracyFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 : Its good to hear positive things about the Charlotte office. Thanks! na is so cute! Who painted her helmet? I want to have Mickey Mouse painted on Braden's helmet and I'm not sure where to go. Thanks. Beth (Charlotte, NC) Mommy of Braden (7 months) Plagio/Brachy >From: Filyaw <monicash@...> >Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member >Date: Fri, 17 Sep 2004 12:39:35 -0700 (PDT) > >Hi Beth, >Welcome to the group. You are in good hands with the Charlotte office (we >went there - can ya tell? ) It took us a while to get the whole process >rolling too. We had our first visit 9/8/03 and na wasn't in her band >until 10/27. Our ped office kept loosing the paperwork - ugh!!! > >Thanks, > >mom to na >DOC Grad >Tort Resolved >SC >www.thefilyaws.com > > >egmyrek <egmyrek@...> wrote: > >Hi everybody. I'm new to the group and I wanted to introduce >myself. My son, Braden, was diagnosed two weeks ago with a >combination of plagiocelpahy/bracycephaly. I was devastated >(although I knew in my heart that this was a problem, which is why I >took him to CT to begin with). I am on an emotional roller coaster >already. Its taken this past two weeks to get anywhere with >insurance. CT would not cast him until we received word back from >United Healthcare. Now we have to wait another week for an >appointment with CT to get him casted, and he won't have his band >until October 8. This seems terribly long to me since this is such >a time sensitive problem and I am so ready to tackle this problem >and get it over with. Anyway, I need to stop here before I start >rambling! I'm so glad you are all here. I can see that this group >is going to make this experience much easier for us! Thanks! > >Beth (Charlotte, NC) >Mommy of Braden (7 months) >Plagio/Bracy > > > >For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 Hi Beth, I painted it 3 times and then used stickers. Painting got to be too time consuming. mom to na DOC grad SC www.thefilyaws.com Gmyrek <egmyrek@...> wrote: : Its good to hear positive things about the Charlotte office. Thanks! na is so cute! Who painted her helmet? I want to have Mickey Mouse painted on Braden's helmet and I'm not sure where to go. Thanks.Beth (Charlotte, NC)Mommy of Braden (7 months)Plagio/Brachy>From: Filyaw <monicash@...>>Reply-Plagiocephaly >Plagiocephaly >Subject: Re: New Member>Date: Fri, 17 Sep 2004 12:39:35 -0700 (PDT)>>Hi Beth,>Welcome to the group. You are in good hands with the Charlotte office (we >went there - can ya tell? ) It took us a while to get the whole process >rolling too. We had our first visit 9/8/03 and na wasn't in her band >until 10/27. Our ped office kept loosing the paperwork - ugh!!!>>Thanks,>>mom to na>DOC Grad>Tort Resolved>SC>www.thefilyaws.com>>>egmyrek <egmyrek@...> wrote:>>Hi everybody. I'm new to the group and I wanted to introduce>myself. My son, Braden, was diagnosed two weeks ago with a>combination of plagiocelpahy/bracycephaly. I was devastated>(although I knew in my heart that this was a problem, which is why I>took him to CT to begin with). I am on an emotional roller coaster>already. Its taken this past two weeks to get anywhere with>insurance. CT would not cast him until we received word back from>United Healthcare. Now we have to wait another week for an>appointment with CT to get him casted, and he won't have his band>until October 8. This seems terribly long to me since this is such>a time sensitive problem and I am so ready to tackle this problem>and get it over with. Anyway, I need to stop here before I start>rambling! I'm so glad you are all here. I can see that this group>is going to make this experience much easier for us! Thanks!>>Beth (Charlotte, NC)>Mommy of Braden (7 months)>Plagio/Bracy>>>>For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Welcome to the group, I think we do have a set of twins being treated in Melbourne (forgive me if I am wrong) that are current members. We have had quite a few Aussie members in the past. mom to na SC, USArabia_misbah_khan <rabia_misbah_khan@...> wrote: Hi everyone,First of all thank you to whoever founded this group to begin with because 'plagio' just doesn't disappear neither does the child outgrow it, so it was great to read all these accounts of people who've been able to address the problem and thanks to all who've shared their stories.I live in Australia and I was just wondering if anyone on the group's from down under?Cheers!For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi, welcome. Please let us know if you have any questions that you cannot find answers to. Ashton will do so well with starting treatment so young. Good for you for being on top of things! Sue Colin F., 13 mos. STARband grad 9/04 brachy --- In Plagiocephaly , " loriswick " <loriswick@y...> wrote: > > Hello- > > I just wanted to say " hello " to all of the plagio parents out > there. I am a brand new member to the group and am still looking > over the site at all of your beautiful children and interesting > stories/chats! I know that I will be on this site frequently, since > our son has just been diagnosed with torticollis and plagio and is > now starting the treatment process! Any advice is certainly welcome! > > Lori.....mom to Ashton 4 1/2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi Lori, Welcome to the group. there is a ton of information here. take is all in bits otherwise you may get information overload! Are you doing repositioning or are you already on the way to a helmet or band? We have a lot of tips for repo and torticollis. Where are you located? We may have some locals who can share their experience with you. Again welcome. mom to na Doc Banded (10/27/03 - 2/20/04) Tort Resolved SCloriswick <loriswick@...> wrote: Hello-I just wanted to say "hello" to all of the plagio parents out there. I am a brand new member to the group and am still looking over the site at all of your beautiful children and interesting stories/chats! I know that I will be on this site frequently, since our son has just been diagnosed with torticollis and plagio and is now starting the treatment process! Any advice is certainly welcome!Lori.....mom to Ashton 4 1/2 monthsFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi Sandy- Thanks for the warm welcome! I do have a wonderful pediatrician! I just feel guilty because I saw this happening to Ashton, and of course knew nothing about it, and everyone kept telling me..... " Oh, he's fine. It will even out. " I just wish that I would have went with my gut early on and contacted his pediatrician earlier to voice my concern. The one time I listened to everyone else and now he has to go through this. I feel like if I would have opened my mouth, at around two months of age, we could have started some repositioning techniques early on and he wouldn't even have to wear the helmet now. I've lied awake wondering this many nights. I am always so firm on always going with my gut when it comes to Ashton and the one time I don't......I just feel so guilty! Lori mom to Ashton > > > > Hello- > > > > I just wanted to say " hello " to all of the plagio parents out > > there. I am a brand new member to the group and am still looking > > over the site at all of your beautiful children and interesting > > stories/chats! I know that I will be on this site frequently, > since > > our son has just been diagnosed with torticollis and plagio and is > > now starting the treatment process! Any advice is certainly > welcome! > > > > Lori.....mom to Ashton 4 1/2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi Lori, I know exactly what you're going through - I also feel really guilty about my son's plagio. However, my neurosurgeon assured me that in almost all cases it is NOT the parents' fault and at 4.5 months Ashton is still really young and should get great results! No worries! Anya (Mom to , 4.5 months, waiting for STARband) > > > > > > Hello- > > > > > > I just wanted to say " hello " to all of the plagio parents out > > > there. I am a brand new member to the group and am still > looking > > > over the site at all of your beautiful children and interesting > > > stories/chats! I know that I will be on this site frequently, > > since > > > our son has just been diagnosed with torticollis and plagio and > is > > > now starting the treatment process! Any advice is certainly > > welcome! > > > > > > Lori.....mom to Ashton 4 1/2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi Anya! When does get his STARband? Our sons are the same age. When was he diagnosed? With what type? I know it is not my fault, however I can't help but feel guilty because his well-being is my responsibility. This is just so scary and at 7 days away from his helmet fitting/receiving, it is all I think about! I just feel for my little guy and really wish he wasn't going through this. I know the end result will be a wonderful round little head, however I know he will go through a lot in the upcoming months and I am just trying to stay optimitstic that I will know how to handle whatever comes our way. This is a wonderful support group and it really helps to talk to you, knowing we are going through the same thing! Thanks! Lori mom to Ashtonanjanewbury <anjanewbury@...> wrote: Hi Lori,I know exactly what you're going through - I also feel really guilty about my son's plagio. However, my neurosurgeon assured me that in almost all cases it is NOT the parents' fault and at 4.5 months Ashton is still really young and should get great results!No worries!Anya (Mom to , 4.5 months, waiting for STARband)> > > > > > Hello-> > > > > > I just wanted to say "hello" to all of the plagio parents out > > > there. I am a brand new member to the group and am still > looking > > > over the site at all of your beautiful children and interesting > > > stories/chats! I know that I will be on this site frequently, > > since > > > our son has just been diagnosed with torticollis and plagio and > is > > > now starting the treatment process! Any advice is certainly > > welcome!> > > > > > Lori.....mom to Ashton 4 1/2 monthsFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Hi , I haven't had mastectomy surgery so I can't share any similar experiences. However, I can offer prayers of support and hopes that the doctors will be able to help you. I do know that this group is absolutely wonderful and the support they give is incredible. Take care, Traci" A. Ellis" <kristin7@...> wrote: I joined this group yesterday..........wow - I really need some support right now. This is my story in brief: I had a double prophylactic mastectomy in 1994 with saline implants put in right after the surgery. I had severe fibrocystic breast problems with a multitude of biopsies The very last biopsy was a "pre-cancerous" tumor instead of a cyst and I remember laying on the table waiting to be rolled into surgery. The surgery list was on the wall (imagine that - before the times of "right to privacy". My name was there and next to it was "probable radical mastectomy". I was having so many biopsies and with a family history of breast cancer the doctor talked to me about having the prophylactic mastectomies. Several years later I made the decision to do it. I thought it would solve huge potential issues - nothing could have prepared me for the nightmare I have lived with since then. I had additional surgery to help with a scar tissue situation that developed around the implants. Five years ago I had the right side implant removed due to some type of infection/inflammation that wouldn't go away. In the meantime I found myself going back to my general doctor with complaints of pain - pain everywhere / pain that would come and go from all parts of my body / muscle pain, joint pain, you name it. Foggy brain feeling / dizziness / generally feeling lousy. After a whole host of tests that came back negative my doctor finally told me he thought I had fibromyalgia. Ah finally a name for it - now I can deal with this I thought. Now the left implant has been painful and I went to my plastic surgeon yesterday and I am going to have it removed next week. He asked me during the exam if I had noticed any "rheumatoid" issues - ya think???????? Yes, yes and yes! I haven't searched the archives yet to try to find answers for all my questions. I can't help but think that these implants are at least partly responsible for my ill health over the years. Has anyone else here had the implants after mastectomy surgery? I'm anxious to share my experience with others who understand. Thanks for your support. Live WellLove Much Laugh Often __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Dearest : I am so glad that you have joined this group. It saddens me to hear your story, but you will find answers here. Most of your symptoms are like those of many of the women here. I had breast implants because of fibrocystic disease after my last son was born. At that time, I was told that breast implants would prevent me from getting cancer. They are still telling women this lie, because of some study that was done on mice! Your doctor sounds like a winner, and he seems to be in the know regarding these devices. This could be a long journey; however, you will not be alone. We will all be here to help you to get through this. Sending love and support.......Lea ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`` New Member I joined this group yesterday..........wow - I really need some support right now. This is my story in brief: I had a double prophylactic mastectomy in 1994 with saline implants put in right after the surgery. I had severe fibrocystic breast problems with a multitude of biopsies The very last biopsy was a "pre-cancerous" tumor instead of a cyst and I remember laying on the table waiting to be rolled into surgery. The surgery list was on the wall (imagine that - before the times of "right to privacy". My name was there and next to it was "probable radical mastectomy". I was having so many biopsies and with a family history of breast cancer the doctor talked to me about having the prophylactic mastectomies. Several years later I made the decision to do it. I thought it would solve huge potential issues - nothing could have prepared me for the nightmare I have lived with since then. I had additional surgery to help with a scar tissue situation that developed around the implants. Five years ago I had the right side implant removed due to some type of infection/inflammation that wouldn't go away. In the meantime I found myself going back to my general doctor with complaints of pain - pain everywhere / pain that would come and go from all parts of my body / muscle pain, joint pain, you name it. Foggy brain feeling / dizziness / generally feeling lousy. After a whole host of tests that came back negative my doctor finally told me he thought I had fibromyalgia. Ah finally a name for it - now I can deal with this I thought. Now the left implant has been painful and I went to my plastic surgeon yesterday and I am going to have it removed next week. He asked me during the exam if I had noticed any "rheumatoid" issues - ya think???????? Yes, yes and yes! I haven't searched the archives yet to try to find answers for all my questions. I can't help but think that these implants are at least partly responsible for my ill health over the years. Has anyone else here had the implants after mastectomy surgery? I'm anxious to share my experience with others who understand. Thanks for your support. Live WellLove Much Laugh Often Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , I had saline implants and yes I had every symptom you mentioned, plus more. I only had them a little over a year, got them removed and I am getting better. Thank God you are getting them taken out of your body. God Bless!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 I had two implants consecutively after a modified radical mastectomy for stage II breast cancer. One implant ruptured after 3 1/2 months (double lumen, combination silicone and saline) and when it was removed, the plastic surgeon left my chest full of silicone. It was replaced, and then I had it removed a year later. I became so ill after the first implant removal that I knew what it was. There were several women back then that had just started publicity about implants, in 1990. I started a group that year. I was severely ill and even my doctors did not think I would live. But, I fooled them. I went on a detox diet, very strict, and cleaned out my system. It took until 1995 for me to think I might have a life of any kind. I am so glad that I got rid of the implant. I think I would be dead if I had not done so. Lynda At 06:32 AM 1/4/2007, you wrote: >I joined this group yesterday..........wow - I really need some >support right now. > >This is my story in brief: > >I had a double prophylactic mastectomy in 1994 with saline implants >put in right after the surgery. I had severe fibrocystic breast >problems with a multitude of biopsies The very last biopsy was a > " pre-cancerous " tumor instead of a cyst and I remember laying on the >table waiting to be rolled into surgery. The surgery list was on >the wall (imagine that - before the times of " right to privacy " . My >name was there and next to it was " probable radical mastectomy " . I >was having so many biopsies and with a family history of breast >cancer the doctor talked to me about having the prophylactic >mastectomies. Several years later I made the decision to do it. > >I thought it would solve huge potential issues - nothing could have >prepared me for the nightmare I have lived with since then. > >I had additional surgery to help with a scar tissue situation that >developed around the implants. Five years ago I had the right side >implant removed due to some type of infection/inflammation that >wouldn't go away. > >In the meantime I found myself going back to my general doctor with >complaints of pain - pain everywhere / pain that would come and go >from all parts of my body / muscle pain, joint pain, you name >it. Foggy brain feeling / dizziness / generally feeling >lousy. After a whole host of tests that came back negative my >doctor finally told me he thought I had fibromyalgia. Ah finally a >name for it - now I can deal with this I thought. > >Now the left implant has been painful and I went to my plastic >surgeon yesterday and I am going to have it removed next week. He >asked me during the exam if I had noticed any " rheumatoid " issues - >ya think???????? Yes, yes and yes! > >I haven't searched the archives yet to try to find answers for all >my questions. I can't help but think that these implants are at >least partly responsible for my ill health over the years. > >Has anyone else here had the implants after mastectomy surgery? > >I'm anxious to share my experience with others who understand. > >Thanks for your support. > > >Live Well >Love Much >Laugh Often > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 I hear your pain and I'm sorry you are going through it. Thanks for sharing. Sometimes it just helps to get it off your chest. Vent anytime you feel a need too.Don't let it stay bottled up, that has disasterous consequences on your body. Deborah -- In , " caleytheo2000 " <patricia.calver- wojcik@...> wrote: > > My husband has chronic Gouty Tophaceous Arthritis. He was first > diagnosed in 1991 but had suffered from gout since he was in his > early 20s. > He has undergone several operations during the past two years - the > last was late 2006 on his foot. It has not healed and he has spent > most of the last 5 months in bed. His pain is severe and pain > management is very difficult for him. > It is very difficult to see the brighter side of life these days for > us. His prognosis is that he will probably never be able to walk > again unassisted. With open wounds on both feet now, he is unable > to wear shoes. When he goes to his appts it takes 2 people to help > him get there and back. > For a man who once was very athletic, to now have faded to this > state, is very difficult to watch. I find myself crying on the way > to work because sometimes just thinking about what my day includes > is getting to be too much for me, physically and emotionally. I > resent my fellow co-workers when I hear them chat about their > big " crisis " and say to myself that they would never make it a week > in my world. > Thank you for listening > Pat > Quote Link to comment Share on other sites More sharing options...
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