Guest guest Posted November 4, 2002 Report Share Posted November 4, 2002 Hi Kerryann welcome to the group. The people here are very helpful and friendly. They have helped me out alot. I found out my daughter Isabella had bilateral clubbed feet from a 16 week ultrasound. She was born October 12th and is in her third set of casts. She gets the heel release procedure done this friday and then put in her last pair of casts. I emailed Dr.Ponsetti myself and asked who he recommended in the kansas city area and he replied the same day. He is a great man. Use the link the other lady gave you and it will give you his email address. He will answer any questions you ask him. I wish i knew what caused clubbed feet but who knows. Keep reading about clubbed feet and the ponsetti method and look at pictures of the procedure and it will help you alot. > Hi! > > I'm new to the group, and looking for a recommendation for a doctor. My daughter, Belle, was born on October 19 with a very mild right club foot that my midwives believe has been caused by the baby's position in the womb. I'm starting to try to gather information, and I'm looking for a recommendation for a doctor in the Raleigh/Durham area. If anyone lives near there, and can recommend a doctor, I would greatly appreciate it. My midwives said that they believe it could be corrected without surgery. I know nothing about club foot, and I'm needing all of the information I can get. > > Thanks! > > KerryAnn > Tupperware Consultant > http://my.tupperware.com/krankedyann > Earn free Tupperware- ask me how! Book your online party today! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Hi! We have our first appointment tomorrow morning at 8:15 with Dr. at UNC Children's Hospital. We have NOT been told that it is definitely club foot. That's why we're going in tomorrow. I'm not sure that it is. So my question- is cf always stiff and immovable? My daughter's feet can be moved into a normal position, but the right foot is too kidney bean shaped, according to my midwife. Thanks! KerryAnn Tupperware Consultant http://my.tupperware.com/krankedyann Earn free Tupperware- ask me how! Book your online party today! corrected, and your baby will go on to have a normal life. Can her foot be moved into a normal position? Have you been told it's definitely clubfoot? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Hello all, I am a 44 year old female with a diagnosis of genetic DNA mitochondrial mutation. My cells aparently use the wrong amino acid when making energy, so not very efficient. Symptoms include weakness and constant fatigue, as well as lots more. I am looking for a mitochodrial specialist that treats adults. I realize any names traded are not endorsements of ability but know of any near Michigan? Dr. Cohen's office at Cleveland Clinic tells me he no longer takes adult patients. Thanks, Marjette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Hi Marjette, Welcome to Mitoldies. You have found a home with others who understand what you are dealing with. We have a number of people on this list from Michigan so I am sure you are going to get some good advice. When you have the opportunity - please check out our links and files as there might be some helpful information there. We have just added data bases and hope to see these filled with lots of interesting and worthwhile information. We'll do our best to answer questions but most of all we are here for your support. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 You are quite welcome here, although I'm sorry that you have the need to be here. I can only hope that your mom's tumor has not progressed far. The surgeon will be able to let you know what to expect from the surgery and whether a bag will be needed. I was fortunate that I didn't need one at all. As far as your personal health, get that colonoscopy. All my siblings got colonoscopies after my Dx and one of them had a polyp that was on it's way to going bad. Since the tendency runs in the family, you probably need to be checked. I'm going to insist that my children get their first one when they reach 20. I'm hoping you'll have good news after the surgery. Please make sure your mom is comfortable with the surgeon and all the other doctors you'll be visiting. Miracles happen, Cliff H. > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hi Monika, Your advice on screening is kind of what my husband and I were thinking - thanks for the added boost. I'll start finding out about what is available here in the UK through either the NHS or through my company's health scheme. It feels quite selfish to be worried about myself as well, but I want to give myself as big a chance as I can. Dad was 51/52 when they found his - his was at the end of the colon hence him needing a colostomy. Thanks everyone for their kind wishes - this disease is nasty, but my Dad is pretty good proof that it can be beaten as he's still going pretty strong 21 years later. I don't remember much about that time - I was 10 - so my knowledge is basic so please excuse any really obvious questions. I'm currently trying to avoid reading too much on the internet until we know a few more details - no point over scaring myself :-) Bst wishes to all Jane > As to your question about your own well being....get a colonoscopy AS > SOON AS POSSIBLE. My husband's father died of this awful disease > when he was 57 years old with a tumor the size of a grapefruit in his > right colon. At the time, they estimated that it had been growing > well over 5 years. In turn, my husband was diagnosed with about a 5 > year old tumor, right side, when he was 51! He had been testing > since age 43 but only with sigmonoscopies that DO NOT show the whole > colon. If his insurance had okay'd a colonscopy when he first > started screening, I wouldn't be posting on this board today. Our > son, who is 27, is having his first colonscopy in the next month or > two. With both parents having this disease, it is extremely > important for you to start screening early. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Wow..what a heap of hope for lots of people. Do you get tested once a year? It's the best thing to do and with virtual colonoscopy's is fairly simple. best of luck,as soon as you hear more keep posting. This is the best site for information, support and just to help you sort things out. hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Wow..what a heap of hope for lots of people. Do you get tested once a year? It's the best thing to do and with virtual colonoscopy's is fairly simple. best of luck,as soon as you hear more keep posting. This is the best site for information, support and just to help you sort things out. hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Hi Nick and Jane, I've not had a test yet - will arrange one soon. Every time I've mentioned it to my GP (admittedly I haven't made a stink about it, just mentioned it) I've been told that I'm no higher risk than anyone else, and just to monitor myself. Now that both parents have suffered I'm not prepared to take No for an answer. I've started putting the wheels in motion about finding out what I can do through my company private health insurance if the NHS won't oblige. Virtual colonscopy's are under trial over here (well, where they are in the UK anyway) - in fact Mum had one on the same day she had her colonoscopy. Should get some more details from the surgeon later today - they're doing all the blood work etc today in prep for surgery on Tuesday (if they can find her a bed!) Best wishes Jane > Wow..what a heap of hope for lots of people. Do you get tested once a year? > It's the best thing to do and with virtual colonoscopy's is fairly simple. > best of > luck,as soon as you hear more keep posting. This is the best site for > information, > support and just to help you sort things out. hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Hi Nick and Jane, I've not had a test yet - will arrange one soon. Every time I've mentioned it to my GP (admittedly I haven't made a stink about it, just mentioned it) I've been told that I'm no higher risk than anyone else, and just to monitor myself. Now that both parents have suffered I'm not prepared to take No for an answer. I've started putting the wheels in motion about finding out what I can do through my company private health insurance if the NHS won't oblige. Virtual colonscopy's are under trial over here (well, where they are in the UK anyway) - in fact Mum had one on the same day she had her colonoscopy. Should get some more details from the surgeon later today - they're doing all the blood work etc today in prep for surgery on Tuesday (if they can find her a bed!) Best wishes Jane > Wow..what a heap of hope for lots of people. Do you get tested once a year? > It's the best thing to do and with virtual colonoscopy's is fairly simple. > best of > luck,as soon as you hear more keep posting. This is the best site for > information, > support and just to help you sort things out. hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hello and welcome Granmom3! It sure is hard to be here with such a horrible disease. I don't have cancer--my beloved brother and sister-in-law do. brother 10/01; resection stage III. six months 5FU/Lev and went almost a year NED (no evidence of disease). In the meantime my sister-in-law had State I uterine cancer with NED for 4 years when she started to have problems; after 2 months of tests, etc., they operated to " explore " problem and found she had recurrence. My brother then decided to have PET scan 9/03 which showed recorrence in lyph node near aeortal; he had radiation and chemo (Xeloda and Oxiplantin) until he couldn't walk (hand/food swelling) diarrhea terribly, mouth sores, lost 31 lbs, and landed in hospital. He has just finished this protocol, will wait a month and have another PET. My sister-in-law has two more chemo treatments (after radiation and a total of 4 chemo treatments). it has been hard for the family. I have been mainly my brother's research partner...and this board is great for discussing almost anything. Welcome to you both! Gurlstar (betty) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hello Granmom3, Welcome, so sorry you are having to fight this monster but very glad you found this group. Don't be shy. This is a very personal disease and we are glad to help and answer questions, provide support or to vent our disappointments or concerns. I have learned so much from the very experienced and long time veterans as well as from the newcomers. Everyone has something important to add and that includes you. Sounds like you have a wonderful family and support at home. Welcome again. Becky Beach > > > Hi all, this is Marsanne, yahoo ID canoetrip_2000, also posts as > > Firefly. I am at my mother's computer and have signed her up with a > > Yahoo account, so SHE is Granmom3, not me! She has Stage 4 Colon > > Cancer, with liver mets, and if I share too much information she > > will get mad at me. She is an introvert. Good thing this is > > pseudonym. If you want her real name, email me and I will blackmail > > her to keep it private. <G> > > > > After a year of successful treatment with chemo, she just found out > > that there is a new tumor in her liver, and she agreed that this > > group would be a good place for her. The doctor is starting her on > > Avastin next week. Mom is an outstanding woman. She and Dad raised 5 > > kids on an air traffic controller's salary. She hung wall paper to > > get me through college. Dad just passed away a couple of months ago, > > but he was really old and an invalid in a nursing home and ready to > > go. Mom is still rockin and sockin at the age of 71. This is an > > amazing, wonderful woman and we are all just crazy about her. We > > will do ANYTHING to keep her going! She has 3 beautiful > > grandchildren and wants to see them grow up. > > > > I live 250 miles away, and am trying to find a job in this city so I > > can move here and be near her and spend as much time with her as > > possible and harass her and probably send her to an early grave! No, > > really, I want to take care of her. (She hates me.) > > OK, please welcome my mother to this group. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Hello: You sound like a rare individual,ready to take on all challanges and rev up your engines. This is a great place to be. On the Avastin a question,with or without another chemo.? My hubby had it,it helped but then the cancers came back bigger abd worse so now we are trying a new tack. Hope you find work near your mom, and hope your mom has great success.If her attitude is like yours,she'e right ontrack. This is a great tome,new discoveries,new procedures and new protocols all emerging this spring. Hope you both enoy a peaceful,blessed Easter Tide and we will add you to our prayer list..Hugs and best wishes Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Hello: You sound like a rare individual,ready to take on all challanges and rev up your engines. This is a great place to be. On the Avastin a question,with or without another chemo.? My hubby had it,it helped but then the cancers came back bigger abd worse so now we are trying a new tack. Hope you find work near your mom, and hope your mom has great success.If her attitude is like yours,she'e right ontrack. This is a great tome,new discoveries,new procedures and new protocols all emerging this spring. Hope you both enoy a peaceful,blessed Easter Tide and we will add you to our prayer list..Hugs and best wishes Nick & Jane Quote Link to comment Share on other sites More sharing options...
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