Guest guest Posted July 3, 2000 Report Share Posted July 3, 2000 Dear Gail: That was an article that I forwarded, and not my opinions. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 ---------- >From: " byteme " <byteme@...> > > Dear Gail: > That was an article that I forwarded, and not my opinions. Marty > > Marty- Oops! Sorry, I must rephrase then, I disagree with the article! gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 ---------- >From: " byteme " <byteme@...> > > Dear Gail: > That was an article that I forwarded, and not my opinions. Marty > > Marty- Oops! Sorry, I must rephrase then, I disagree with the article! gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Sandy, I would love the info. on the process. I am in the process of appealing my insurance comp. for more speech for my son Bobby. Thanks Mom to just turned 5 and Bobby almost 3 Bernardsville NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 hello i, too, was able to obtain a medical assistance card for my son mattew and now we are patiently waiting for his speech therapist to get back to as with his availability since speech therapy was stopped due to select blue not paying anymore!!! it's easy to get an MA card, took me close to a month to get it.......but it's worth it not worrying how many more sessions will be approved. Can't wait to start back to therapy with mattew and continue to see progress. Another question, where in pittsburgh is there a support group/where did you get your help from on obtaining your MA card??? thanks for your time kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 In a message dated 6/8/01 3:39:57 PM !!!First Boot!!!, writes: << Subject: hairloss I have lost a great deal of hair also. I am a hairstylist. I researched some products and the winner is Nioxin. They have a website and will recommend what your individual needs are, whether your hair is chemically treated (color, hilites, perm). LOOK them up, I just started the suppliments,(lower price than GNC) Overman >> Hello, I am not a hairstylist but I have had some hair loss and I am two years out now. I still lose some but also know there is regrowth happening or I would be bald by now. Anyway, I use a product by Redken it is called Fat Cat hair treatment for thin hair - hair booster. I find it does not leave any residue on hair and makes the hair look full. Enjoy the weekend. Janet in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Connie, my daughter had this on july31st last year because her cavity was so big from 2 previous surgeries that it was impossible tocontrol the infection and drainage.s surgeon is FANTASTIC and loads of docs watched the operation and told us how beautiful the work was.Unfortunately drainage continued, and the graft did not form skin.Then a small area of the graft failed. has just spent aweek in hospital on i.v. antibiotics, and for the 1st time in 2 years there is no discharge or swelling.She is having yet another revission mastoidectomyy ,thiss time with a cartilaage graft on 16th april.If it works eventually y will be able to swim, which seems wonderful to us.I think obliteration ssurgery rules out reconstruction of hearing, but as we are all aware,in treatment of cholesteatoma, the primary goal is a safe ear.Of course your circumstances may be very different to Ems,it might be worth suggesting very aggressive antibiotic treatment 1st.Even tho Ems1st attempt at obliteration has failed, I can still see thje point, and I still have complete faith in her doctor.I hope this helps. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 , Thank you. I've had intensive antibiotic treatment--for about 1.5 years. The only type not provided was intravenous and my doc really doesn't want to go that route. So, I'll continue to put my mixture into the ear until June. At that time, if he is still suggesting obliteration, I believe I will get a second opinion prior to seeing the surgeon. It is my understanding that the surgeon at the teaching/research hospital is one who believes in agressive approaches to ongoing problems. I'm ready for some aggressive treatment but want to ensure that this is a step forward in my treatment. I would like nothing better than to step into the pouring rain or run through a sprinkler with my grandchildren. I'm told that I'm not a good candidate for reconstructive hearing procedures so that is not a major concern of mine. Thanks again for the info and when/if the decision is made to obliterate, I will let you know the process and outcome. Connie ----Original Message Follows---- From: BoarofBadenoch@... Reply-cholesteatoma cholesteatoma Subject: Re: Digest Number 204 Date: Sun, 31 Mar 2002 10:10:15 EST MIME-Version: 1.0 Received: from [66.218.66.72] by hotmail.com (3.2) with ESMTP id MHotMailBE7071B9005D4004315042DA424825C2172; Sun, 31 Mar 2002 07:11:29 -0800 Received: from [66.218.67.201] by n17.grp.scd. with NNFMP; 31 Mar 2002 15:10:20 -0000 Received: (EGP: mail-8_0_3_1); 31 Mar 2002 15:10:19 -0000 Received: (qmail 32863 invoked from network); 31 Mar 2002 15:10:19 -0000 Received: from unknown (66.218.66.218) by m9.grp.scd. with QMQP; 31 Mar 2002 15:10:19 -0000 Received: from unknown (HELO imo-d02.mx.aol.com) (205.188.157.34) by mta3.grp.scd. with SMTP; 31 Mar 2002 15:10:18 -0000 Received: from BoarofBadenoch@... imo-d02.mx.aol.com (mail_out_v32.5.) id r.c.259f1de1 (4397) for <cholesteatoma >; Sun, 31 Mar 2002 10:10:16 -0500 (EST) From sentto-3569392-1184-1017587420-cefgibb Sun, 31 Mar 2002 07:11:33 -0800 X-eGroups-Return: sentto-3569392-1184-1017587420-cefgibb=hotmail.com@... X-Sender: BoarofBadenoch@... X-Apparently-cholesteatoma Message-ID: <c.259f1de1.29d880d7@...> X-Mailer: AOL 7.0 for Windows UK sub 52 X--Profile: boarofbadenoch Mailing-List: list cholesteatoma ; contact cholesteatoma-owner Delivered-mailing list cholesteatoma Precedence: bulk List-Unsubscribe: <mailto:cholesteatoma-unsubscribe > Connie, my daughter had this on july31st last year because her cavity was so big from 2 previous surgeries that it was impossible tocontrol the infection and drainage.s surgeon is FANTASTIC and loads of docs watched the operation and told us how beautiful the work was.Unfortunately drainage continued, and the graft did not form skin.Then a small area of the graft failed. has just spent aweek in hospital on i.v. antibiotics, and for the 1st time in 2 years there is no discharge or swelling.She is having yet another revission mastoidectomyy ,thiss time with a cartilaage graft on 16th april.If it works eventually y will be able to swim, which seems wonderful to us.I think obliteration ssurgery rules out reconstruction of hearing, but as we are all aware,in treatment of cholesteatoma, the primary goal is a safe ear.Of course your circumstances may be very different to Ems,it might be worth suggesting very aggressive antibiotic treatment 1st.Even tho Ems1st attempt at obliteration has failed, I can still see thje point, and I still have complete faith in her doctor.I hope this helps. Good luck. _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 In a message dated 11/12/2002 5:17:56 AM Eastern Standard Time, writes: > It seems a lot of the sma ppl on this group suffer from these " excessive > secretions " and such. What I am wondering is, is it all the time or just > when you or the child you are speaking of has a cold? How old are the > people who experience this? And what type of sma does it seem to affect > most? I didn't realize it could be so bad for some. I know when I get a > cold it is more difficult for me to deal with than most non-sma ppl, but it > isn't all the time...that is why I am curious Hi Joy, I'm Vickie, 49 with types 2 and or 3, depending on what doc you're dealing with. My volumes of secretions started happening with me a few months ago. I still can't figure out why it started. Any way, if I get the least bit " strangled " while drinking, or choked on a pill or something, then they start. Also, I get some if I sleep too long on my back even with my head elevated. It gets real bad and kind of scary at times. I have a couple of these episodes every day or so. Any one else like me? I really love this list a the ppl on it because it keeps me from feeling like " I 'm the only one. " Love and good health to you all and welcome to the " newbies " Vickie 0:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Dear S, That is a good question - what are we going to do about her potential tethered cord?? Well - so far, nothing. We are going to repeat her MRI in September to see if it is any clearer. Our neurosurgeon was really wanting to do the detethering surgery at first, but 2 of her diagnostic tests (ultrasound of kidney and liver, and an SSEP) came back so normal, he hesitated and said there is no rush - we have at least 6 months - let her grow and let's reassess her then. So - not willing to jump into surgery either - we are taking that 6 months and letting things be for now. Do you know where the end of the cord sat in Cam's MRI? 's cord is at the very very end of the L2. Normally it should be in the L1 area or in the L1-L2 space - but it is defniitively tethered when it is below L2 - is sitting RIGHT on the end of L2 - which can be 50/50. We were told the same thing - that unless he went in there, he wouldnt' be able to tell - unless had symptoms (besides the scoliosis) he didn't want to rush into that surgery. So - we are watching, waiting, hoping, praying - etc. - I " m sure you know.... That is an amazing change from 85 to 63 - wonder why it's up to 69 again - I hope it isn't retethered - but what are the other alternatives? Have you thought about/researched/discussed casting? Does Cam wear a brace?? How old is he? BTW, you did NOT ramble! :-) Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Robin, HI, I believe his cord was at around T2. I couldn't find the answer in his med. records. Since we might be going through all this again, with Cam and maybe Dyl, I'm going to have his records from the neuro. in Portland sent. I'll let ya know for sure when I get them. Cam has never worn a brace. Since his back was trying to straighten we didn't go with one. Our ortho. back in Portland wasn't very open minded, he never mentioned any of the options I've learned this time around. I'm actually hoping for a re-tethered cord. If it is theres the possibility it will straighten more on its own and hold the curve without getting worse, so we can hold off an instramentation until hes older. The alternatives are a syrinx, or if niether is responsible for the sudden change, he will need the growth rob or rib at the end of the summer. His ortho. said he wouldn't cast Cam if he was his child. I think it was because of his age. I still need to ask him(I'm waiting until the boys have thier MRI's in June) They are checking Dylan for a tethered cord also, his back went from 26-40 degrees in 2 1/2 months. Is 's curve progressing quickly? I would be worried about waiting six months. Just one big growth spurt could progress it really fast. The doctor was really surprised at how fast Dyls progressed. I'm glad I didn't wait the full three mo. like he said. He will probably cast Dyl, depending on what the MRI shows. What is 's curve at? I am kicking myself for not demanding an MRI as soon as I found out Dyl was at 26 degrees. After everything with Cam, I should have known the wait and see thing was not a good option. I would hate for hers to get worse in the mean time. And I would hate for you to have to go through the whole guilt thing like I am! I'm sooooo mad at myself!!! Anyway, go with your gut feeling. I've learned a mothers gut feeling is usually right!! Take Care!! S. P.S. Cam is 4 1/2 -- In infantile scoliosis treatment , " Robin Wasserman and Goldberg " <RAWnHDG@e...> wrote: > Dear S, > > That is a good question - what are we going to do about her potential > tethered cord?? Well - so far, nothing. We are going to repeat her MRI in > September to see if it is any clearer. Our neurosurgeon was really wanting > to do the detethering surgery at first, but 2 of her diagnostic tests > (ultrasound of kidney and liver, and an SSEP) came back so normal, he > hesitated and said there is no rush - we have at least 6 months - let her > grow and let's reassess her then. So - not willing to jump into surgery > either - we are taking that 6 months and letting things be for now. > > Do you know where the end of the cord sat in Cam's MRI? 's cord is at > the very very end of the L2. Normally it should be in the L1 area or in the > L1-L2 space - but it is defniitively tethered when it is below L2 - is > sitting RIGHT on the end of L2 - which can be 50/50. > > We were told the same thing - that unless he went in there, he wouldnt' be > able to tell - unless had symptoms (besides the scoliosis) he didn't > want to rush into that surgery. So - we are watching, waiting, hoping, > praying - etc. - I " m sure you know.... > > That is an amazing change from 85 to 63 - wonder why it's up to 69 again - I > hope it isn't retethered - but what are the other alternatives? Have you > thought about/researched/discussed casting? Does Cam wear a brace?? How > old is he? > > BTW, you did NOT ramble! :-) > > Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Tonya, The first 6 weeks before my first fill was the most difficult part of my band journey. I did not expect to experience such hunger. I remember questioning Jessie at a support group meeting. She told me if I was hungry to eat something. Remember this is the time that your stomach is healing. So go ahead & eat something; but look for a band friendly food. I agree that this is not a diet; but a new way of living. In order to be successful you need to be conscious of your food choices. Things will be better once you get your first fill. If you find that your first fill doesn't dim or quiet your hunger, then make sure you go in & have Jessie or Debi give you another adjustment. I wish you great success with your new tool. From looking at your stats you are already seeing some great changes. Colleen Dr Watkins 12/29/03 323/188/170 Quote Link to comment Share on other sites More sharing options...
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