Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 What's Amphoterincin? Sounds like a prescription anti-fungal, is it like nystatin or diflucan? Yeast is one of my daughter's main issues, and as tempted as I've been in the past to go with a drug I just kept coming back to it not being the best/or even a viable solution. I'm also on an adult candida group and see the same thing. Perhaps there are people it works for and they move on with their life so you don't hear from them. Many have said it might help but then it will come back and possible stronger as it will have developed a resistance to the drug (it is proven this organism can and does change forms). But I still thought, well I want it out of there and then I can just focus on the clean up. Then someone put it in a way I finally came to terms with it. They said it's like taking a hose to an ant hill. At first while you blast the water they are gone, but as soon as you turn it off they are back in full swing. Kari Just getting started Here's my current concerns: His OAT profile has been high in arabinose (80) and our DAN doctor therefore put him on Amphotericin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 > My concern is that he is regressing in that his visual attempts for > regulation and tantrums have since increased from BEFORE we started > the anti-fungal (it's been a month). It's also harder to get him > engaged, he seems distracted alot more now than before. Does this > sound typical of a die-off effect? I know I have to give the enzymes > more time, but how long? It can be die off. It can be that he is not tolerating the enzymes. It can be that he is not tolerating the yeast killer. It can be that he is still eating foods which he does not tolerate. And visuals can mean he needs vitamin A. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Yes, amphotericin is a prescription anti-fungal. Our compounding pharmacist referred to it as the " bigger better nystatin " . I am also concerned about the yeast coming back (or just getting stronger) so we started Pro-Bio Gold during the final week on the prescription. We have another urine test next week and I'm anxious to find out what happened with this yeast. I'm sticking with the enzymes too in the hope that the next couple weeks will show improvement. It's frustrating because he had very " few " behaviors before and we were hoping that the diet and therapies would help prevent them from coming....oh well, we can fight this one too! What other anti-yeast methods have you had good results with? > What's Amphoterincin? Sounds like a prescription anti-fungal, is it like nystatin or diflucan? Many have said it might help but then it will come back and possible stronger as it will have developed a resistance to the drug (it is proven this organism can and does change forms). > Kari > Just getting started > Here's my current concerns: > > His OAT profile has been high in arabinose (80) and our DAN doctor > therefore put him on Amphotericin. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 I wish I could be more of an expert on what to do. We've had a rocky start, stumbling over food allergies we didn't know about and phenols. To complicate matters, I just realized my 8 yr old daughter has been cheating at school more than she led on. Which really knocked my analysis of the situation all out of whack in trying to figure out what was OK and what wasn't. Really drove me nuts. But the good news is 5 months into it I will say at least I know feel confident we can have what we call " angle days " if every bit of food is carefully selected-not a long term place to be because it's way too stressful. We also used probiotics and caprylic acid. Did a lot of research on GSE and finally tried it a few weeks ago, and really felt I noticed a difference. I got a bit worried about possibly killing off too much good bacteria and the stress it can put on phase 1 of the liver,so after 5 days of heavy dose backed off. But stool test came back OK so I'm definitely going to try it again soon. Good luck, Kari Re: Just getting started Yes, amphotericin is a prescription anti-fungal. Our compounding pharmacist referred to it as the " bigger better nystatin " . I am also concerned about the yeast coming back (or just getting stronger) so we started Pro-Bio Gold during the final week on the prescription. We have another urine test next week and I'm anxious to find out what happened with this yeast. I'm sticking with the enzymes too in the hope that the next couple weeks will show improvement. It's frustrating because he had very " few " behaviors before and we were hoping that the diet and therapies would help prevent them from coming....oh well, we can fight this one too! What other anti-yeast methods have you had good results with? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 > My son just started AFP Peptizyde 3 days ago and taken him off the diet for the most part. > He's been having reactions though, Keep the AFP, go back on his previous diet. If the reactions get better, this means he tolerates the enzyme but not one or more of the foods. Then try adding back either gluten or casein, see which one is causing the problem. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 In a message dated 16/04/2006 22:28:35 GMT Daylight Time, joyseraph@... writes: Enzyme (Kirkman's) don't remember which one -Enzyme Aid (Kirkman's) for infraction days >>>Have a look at Houstons, you want HN-Zyme or Zyme Prime (no frutie enzymes in Zyme Prime) for general digestion. Kirkman have Kiwi which can be problematic _www.houstonni.com_ (http://www.houstonni.com) lts of info on _www.enzymestuff.com_ (http://www.enzymestuff.com) HTH Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2006 Report Share Posted April 16, 2006 Thanks so much...been doing more reading and researching, and i am going to look into Houston's, since so many seemto prefer it over Kirkmans. Joy > > > In a message dated 16/04/2006 22:28:35 GMT Daylight Time, > joyseraph@... writes: > > Enzyme (Kirkman's) don't remember which one > -Enzyme Aid (Kirkman's) for infraction days > > > > >>>Have a look at Houstons, you want HN-Zyme or Zyme Prime (no frutie > enzymes in Zyme Prime) for general digestion. Kirkman have Kiwi which can be > problematic > > _www.houstonni.com_ (http://www.houstonni.com) > > lts of info on > > _www.enzymestuff.com_ (http://www.enzymestuff.com) > > HTH > Mandi in UK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hello, I'm also just getting started with enzymes (although have been doing the diet for 2 years). From all I've read, I think Houston's enzymes would be great for my son EXCEPT for corn. Are there other brands that have an enzymes with no papaya, bromelain and corn for a genenral enzyme and also an enzyme to address phenols? Thanks for your help, e > > > > > > In a message dated 16/04/2006 22:28:35 GMT Daylight Time, > > joyseraph@ writes: > > > > Enzyme (Kirkman's) don't remember which one > > -Enzyme Aid (Kirkman's) for infraction days > > > > > > > > >>>Have a look at Houstons, you want HN-Zyme or Zyme Prime (no > frutie > > enzymes in Zyme Prime) for general digestion. Kirkman have Kiwi > which can be > > problematic > > > > _www.houstonni.com_ (http://www.houstonni.com) > > > > lts of info on > > > > _www.enzymestuff.com_ (http://www.enzymestuff.com) > > > > HTH > > Mandi in UK > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi, I am also just starting enzymes (although we've been doing the diet for 2 years - but we are down to so few foods - that I've decided to give enzymes a try). From what I've read, I believe Houston's enzymes would best suit our needs, but I am concerned about the corn in those enzymes. Are there other brands of enzymes that donot contain papaya, bromelain and corn? I am also looking for an enzyme that addresses phenols (that does not contain papaya, bromelain and corn). TIA, e > > > In a message dated 16/04/2006 22:28:35 GMT Daylight Time, > joyseraph@... writes: > > Enzyme (Kirkman's) don't remember which one > -Enzyme Aid (Kirkman's) for infraction days > > > > >>>Have a look at Houstons, you want HN-Zyme or Zyme Prime (no frutie > enzymes in Zyme Prime) for general digestion. Kirkman have Kiwi which can be > problematic > > _www.houstonni.com_ (http://www.houstonni.com) > > lts of info on > > _www.enzymestuff.com_ (http://www.enzymestuff.com) > > HTH > Mandi in UK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, I'm here in Houston also. Dr. Harrington did my surgery in 1967. I'm 56 years old. You probably saw Jessie Dickson, at some point also. Dr. Daryl Hanson seems to be the guy to know, now. I have seen him and like him. My insurance company does not cover my seeing Hanson, so I see Edith Rumbaugh at the Spine Center at Kelsey Seybold. I just love her. She understands spines and pain! Others on this list can tell you more about flatback than I. I have other issues. I would be happy to talk to you on the phone or meet in person. Debra cosby@... Houston, Texas Tyra Bevers wrote: > > , > Thank you for your encouraging response to my cry. I know Jesus > is with me but it helps to know there are others who have experienced > what I am looking at. I live in Houston, Texas--the home of the great > Texas Medical Center. I haven't heard of any particular specialists > in Houston. A friend has told me of her journey with Dr Michal > LaGrone in Amarillo. > My husband and I are retired and I am concerned about the huge > cost we may be facing and am concerned also about the change in health > care our government is dangling over our heads. > I'd appreciate any counsel. Thanks for caring. > Tyra > > ------------------------------------------------------------------------ > *From:* Kirkaldie <.Kirkaldie@...> > *To:* > *Sent:* Friday, October 23, 2009 6:27:33 AM > *Subject:* Re: [ ] Just getting started > > > > Tyra, > > Welcome to the group! > > You didn't mention where in the country you are? A jumping off point > is the Scoliosis Research Society site. There you can find docs > usually within your own state, or a neighboring state. Their doctor > locator is a big help. Look for aging, or adult as key words in the > doc's description. > > Doc's spoken about here often, mostly are big city docs, so they are > regional. You will hear many of the same names spoken about here, as > these docs do revision surgery often and have proven track records, > and patients here that have used those docs. > > Getting diagnosised is step one, then it's just what is possible for > you. Most of us get more than one opinion, so it's possible to weigh > and make the best decision as to care. Many will have to travel, as > not all states have docs suited for our care, or up to it surgically. > Not a time to go with a doc who is " willing " but has only done a > couple, experience matters. > > So send along where you are located, and we will try and help you find > opinion docs if not in state at least regionally. > > Flatback is a big word to swallow, but as in all things medical, it > just means research, learning, finding the best doc for you, and > seeing what is possible. Our site gives many opportunities to learn, > grab a cup of coffee, and read, the FILES section is a great jumping > off place. A informed patient asks the best questions, and being > informed gives you power, as you move through all this. > > I'm sorry this is happening to you, I've been in the place you are > now, but know there is hope for a better day, I sit here just a month > from my 8 year anniversary of my own revision, doing quite well. > > We look forward to hearing more from you, and once again welcome! > > > Colorado Springs > > * [ ] Just getting started > > > > I am 62 years old with a 35 year old Harrington rod in my back and > a local orthopedic surgeon diagnosed flatback syndrome. I want to > find the best care I can get, but don't know who to contact. Any > help? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, Welcome to the group. I am sorry you are also in this predicament...but at least you have a doctor that had the awareness of what was goin on with you to at least not tell you to " live with it " or act like it was all in your head...a not uncommon scenario. I would start by asking what your diagnosing doctor suggested as a course of action? Does he feel you are the surgical point, and is he proposing to do the surgery himself...or does he recommend you consult with a particular doctor? As suggested, you might use the Scoliosis Research Society's website to cross reference any names you come up with....although as hard as it seems to be for most Houstonians to accept....many of them find that the closest highly qualified surgeon with an excellent track record leads them to DrLaGrone up in Amarillo. Regardless of how you approach this, I think taking it in bite sized pieces is really the easiest for most of us. If you think of it as a whole " thing " it can be a bit overwhelming at first. So instead, put yourself in a frame of mind that you are in the research phase, which does not mean anything other than you are educating yourself to the possibilities. This will include becoming somewhat educated about flatback in general and your own specific case. This will really help as you begin to seek opinions as you will actually understand what they are saying and proposing! Things that usually are accomplished during this phase are learning what is in your medical record, gathering all old xrays and written reports reports that date as far back as you can locate. You should study and explore the various doctors you will consult and decide if you believe in getting 2 opinions for yourself before you make this decision. (I stongly recommend it...and I think if you google " second opinions " you will find a wealth of knowledge about why, with any major surgery you should seek one). I am not sure what you were saying with regard to the changes pending with regard to changes in health care, but if you are saying that you feel you will have new options available to you, I believe you are correct....but they may take some time for implementation. And that is probably fine...as the phase you are in usually stretches out for awhile as you go through " the process " . If finances are a concern you should focus on the fact that xrays and consultations are usually not the most expensive part of the process...and if you spread out the times and travel so that you can take advantage of travel deals you will probably find this part is not so bad. Remember too that you can consider seeing a doctor that is farther away but close and economical by air. My hubby flies for Continental, so I know that you have a network of direct flights to just about every major city in the US! Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Cam, Thank you for your educated input. The "little pieces" helped a bit. I have been a bit overwhelmed with unknowns. My local doctor, God bless him, is 37 years old and obviously is not a seasoned veteran in revision surgery. He says he can give me 35 more good years with surgery. I would rather have surgery here in Houston, but more and more, the prospect of going to Amarillo seems likely. The difficulties of traveling so far on top of the daunting prospect of major back surgery is overwhelming too. Thank you for your help and support. I know Jesus and I can do this!! Tyra From: cammaltby <cammaltby@...> Sent: Friday, October 23, 2009 9:19:40 AMSubject: [ ] Re: Just getting started Tyra,Welcome to the group. I am sorry you are also in this predicament. ..but at least you have a doctor that had the awareness of what was goin on with you to at least not tell you to "live with it" or act like it was all in your head...a not uncommon scenario.I would start by asking what your diagnosing doctor suggested as a course of action? Does he feel you are the surgical point, and is he proposing to do the surgery himself...or does he recommend you consult with a particular doctor?As suggested, you might use the Scoliosis Research Society's website to cross reference any names you come up with....although as hard as it seems to be for most Houstonians to accept....many of them find that the closest highly qualified surgeon with an excellent track record leads them to DrLaGrone up in Amarillo. Regardless of how you approach this, I think taking it in bite sized pieces is really the easiest for most of us. If you think of it as a whole "thing" it can be a bit overwhelming at first. So instead, put yourself in a frame of mind that you are in the research phase, which does not mean anything other than you are educating yourself to the possibilities. This will include becoming somewhat educated about flatback in general and your own specific case. This will really help as you begin to seek opinions as you will actually understand what they are saying and proposing!Things that usually are accomplished during this phase are learning what is in your medical record, gathering all old xrays and written reports reports that date as far back as you can locate. You should study and explore the various doctors you will consult and decide if you believe in getting 2 opinions for yourself before you make this decision. (I stongly recommend it...and I think if you google "second opinions" you will find a wealth of knowledge about why, with any major surgery you should seek one).I am not sure what you were saying with regard to the changes pending with regard to changes in health care, but if you are saying that you feel you will have new options available to you, I believe you are correct....but they may take some time for implementation. And that is probably fine...as the phase you are in usually stretches out for awhile as you go through "the process". If finances are a concern you should focus on the fact that xrays and consultations are usually not the most expensive part of the process...and if you spread out the times and travel so that you can take advantage of travel deals you will probably find this part is not so bad. Remember too that you can consider seeing a doctor that is farther away but close and economical by air. My hubby flies for Continental, so I know that you have a network of direct flights to just about every major city in the US!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, I am glad that helped. Just take one thing at a time and you will get to where ever you need to go. Who is your young surgeon making such big promises? That would worry me a little. Even the most competent of surgeons tend to be very cautious about over promising in this surgery. It is very complex and the outcomes are never guaranteed. One piece of information I learned was one members recounting of her exam with DrLaGrone. He told her that doing an incomplete procedure that did not address flatback in its entirety could make it impossible to ever really get to a good result. So all that is to say, be sure of what you are buying in this surgery. I know that debility and pain can cause one to jump on the first solution that appears. Please consider that this may not be the case. I admire your faith and the strength it gives you, however as an atheist I hope I can assure you that someone of any faith or belief system can, and do, get through this! I know that you will too. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, Travel is travel, unfortunately for many it is just part of the mix, takes planning, money and effort. I wish there was more of these docs everywhere, just isn't. I'm lucky my doc was local for me, in the Denver area, so mine was a half hour car ride away, but most here haven't been that lucky. It's great that Amarillo and LaGrone are a fairly close option( I know Texas is big and thats revelant), but if you have to fly to a consult with him, there are also good surgeons a flight away too, say Bridwell in St. Louis. The nice thing is that other patients here in the past tell how well LaGrone is set up for out of town patients. You may look into Southwest airlines, they fly I believe into Amarillo, and their DING program has great prices. I'd go to the majors sites, the airlines themselves, and say Orbitz and Travelosity for a look see to costs. You are one step ahead since you have a friend who has dealt with LaGrone, and I'm guessing is local to you, and can be a wealth of info for you. I know all this is daunting, you just have to bite it off a little at a time. What did the surgeon you saw local propose for you? I thought him saying he could give you another good 35 years interesting. I had my revisions starting at 41, and that would put me at 76, and I'd be thankful for that! We have gals with more years revised than me, Bonnie at 11 or 12, and then me at 8 that are currently active in the group. I'm thankful that by 2000 when my surgical battle began to fix my Flatback, the docs had really progressed, and gotten the technique improved. I'm grateful everyday for my good fortune, Dr. Kumar and his skills truly gave me back a fullly functioning life. None of this is easy, and doing it away from home, not easy either, but some docs are better set up for out of town patients, and Lagrone's practice seems to be well set up for that. Hopefully some of his patients will chime in. Colorado Springs [ ] Just getting started I am 62 years old with a 35 year old Harrington rod in my back and a local orthopedic surgeon diagnosed flatback syndrome. I want to find the best care I can get, but don't know who to contact. Any help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Thanks, ! From: Kirkaldie <.Kirkaldie@...> Sent: Friday, October 23, 2009 10:36:48 AMSubject: Re: [ ] Just getting started Tyra, Travel is travel, unfortunately for many it is just part of the mix, takes planning, money and effort. I wish there was more of these docs everywhere, just isn't. I'm lucky my doc was local for me, in the Denver area, so mine was a half hour car ride away, but most here haven't been that lucky. It's great that Amarillo and LaGrone are a fairly close option( I know Texas is big and thats revelant), but if you have to fly to a consult with him, there are also good surgeons a flight away too, say Bridwell in St. Louis. The nice thing is that other patients here in the past tell how well LaGrone is set up for out of town patients. You may look into Southwest airlines, they fly I believe into Amarillo, and their DING program has great prices. I'd go to the majors sites, the airlines themselves, and say Orbitz and Travelosity for a look see to costs. You are one step ahead since you have a friend who has dealt with LaGrone, and I'm guessing is local to you, and can be a wealth of info for you. I know all this is daunting, you just have to bite it off a little at a time. What did the surgeon you saw local propose for you? I thought him saying he could give you another good 35 years interesting. I had my revisions starting at 41, and that would put me at 76, and I'd be thankful for that! We have gals with more years revised than me, Bonnie at 11 or 12, and then me at 8 that are currently active in the group. I'm thankful that by 2000 when my surgical battle began to fix my Flatback, the docs had really progressed, and gotten the technique improved. I'm grateful everyday for my good fortune, Dr. Kumar and his skills truly gave me back a fullly functioning life. None of this is easy, and doing it away from home, not easy either, but some docs are better set up for out of town patients, and Lagrone's practice seems to be well set up for that. Hopefully some of his patients will chime in. Colorado Springs [ ] Just getting started I am 62 years old with a 35 year old Harrington rod in my back and a local orthopedic surgeon diagnosed flatback syndrome. I want to find the best care I can get, but don't know who to contact. Any help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Thank you, Cam, for your words of encouragement. Oh, that you could know my Jesus! Love, Tyra From: cammaltby <cammaltby@...> Sent: Friday, October 23, 2009 10:12:44 AMSubject: [ ] Re: Just getting started Tyra,I am glad that helped. Just take one thing at a time and you will get to where ever you need to go.Who is your young surgeon making such big promises? That would worry me a little. Even the most competent of surgeons tend to be very cautious about over promising in this surgery. It is very complex and the outcomes are never guaranteed.One piece of information I learned was one members recounting of her exam with DrLaGrone. He told her that doing an incomplete procedure that did not address flatback in its entirety could make it impossible to ever really get to a good result. So all that is to say, be sure of what you are buying in this surgery. I know that debility and pain can cause one to jump on the first solution that appears. Please consider that this may not be the case.I admire your faith and the strength it gives you, however as an atheist I hope I can assure you that someone of any faith or belief system can, and do, get through this! I know that you will too.Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Debra, Thanks for your reply. I did have Dr. Dickson's associate, Wendell Irwin, do my scoliosis surgery. I'm thankful for 33 good years! I really need a flatback specialist. I don't think we have any in Houston. Tyra From: Debra Cosby <cosby@...> Sent: Friday, October 23, 2009 8:41:45 AMSubject: Re: [ ] Just getting started Tyra,I'm here in Houston also. Dr. Harrington did my surgery in 1967. I'm 56 years old. You probably saw Jessie Dickson, at some point also. Dr. Daryl Hanson seems to be the guy to know, now. I have seen him and like him. My insurance company does not cover my seeing Hanson, so I see Edith Rumbaugh at the Spine Center at Kelsey Seybold. I just love her. She understands spines and pain!Others on this list can tell you more about flatback than I. I have other issues. I would be happy to talk to you on the phone or meet in person.Debracosby@...Houston, TexasTyra Bevers wrote:> > ,> Thank you for your encouraging response to my cry. I know Jesus > is with me but it helps to know there are others who have experienced > what I am looking at. I live in Houston, Texas--the home of the great > Texas Medical Center. I haven't heard of any particular specialists > in Houston. A friend has told me of her journey with Dr Michal > LaGrone in Amarillo. > My husband and I are retired and I am concerned about the huge > cost we may be facing and am concerned also about the change in health > care our government is dangling over our heads. > I'd appreciate any counsel. Thanks for caring.> Tyra>> ------------ --------- --------- --------- --------- --------- -> *From:* Kirkaldie <.Kirkaldie@ Comcast.net>> *To:* @ groups. com> *Sent:* Friday, October 23, 2009 6:27:33 AM> *Subject:* Re: [ ] Just getting started>> >> Tyra,> > Welcome to the group!> > You didn't mention where in the country you are? A jumping off point > is the Scoliosis Research Society site. There you can find docs > usually within your own state, or a neighboring state. Their doctor > locator is a big help. Look for aging, or adult as key words in the > doc's description.> > Doc's spoken about here often, mostly are big city docs, so they are > regional. You will hear many of the same names spoken about here, as > these docs do revision surgery often and have proven track records, > and patients here that have used those docs.> > Getting diagnosised is step one, then it's just what is possible for > you. Most of us get more than one opinion, so it's possible to weigh > and make the best decision as to care. Many will have to travel, as > not all states have docs suited for our care, or up to it surgically. > Not a time to go with a doc who is " willing" but has only done a > couple, experience matters.> > So send along where you are located, and we will try and help you find > opinion docs if not in state at least regionally.> > Flatback is a big word to swallow, but as in all things medical, it > just means research, learning, finding the best doc for you, and > seeing what is possible. Our site gives many opportunities to learn, > grab a cup of coffee, and read, the FILES section is a great jumping > off place. A informed patient asks the best questions, and being > informed gives you power, as you move through all this.> > I'm sorry this is happening to you, I've been in the place you are > now, but know there is hope for a better day, I sit here just a month > from my 8 year anniversary of my own revision, doing quite well.> > We look forward to hearing more from you, and once again welcome!> > > Colorado Springs>> * [ ] Just getting started>> >> I am 62 years old with a 35 year old Harrington rod in my back and> a local orthopedic surgeon diagnosed flatback syndrome. I want to> find the best care I can get, but don't know who to contact. Any> help?>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, I'm very close being in the catagory as you are...except...I'm older 68. My surgery was done 23 years ago by a working partner of Dr. Harrington, his name was Fulton S. Tompkins..he eventually located in OKC. The Harrington rod and luky wire has worked beautiful for me. Now flatback has sat in and Dr. LaGrone will do the revision on me just as soon as I finish a 5 year program (1 year left)for cancer, having a double masectomy. I know about travel...because I'm a patient at MD in Houston, and live about 2 1/2 hours north east of Amarillo in Okla. Sounds like by this forum there are several good surgeons to choose from.....I would like to suggest you pray and consider an opinion from Dr. LaGrone. If I can help you in Amarillo, by meeting you at airport and taking you to your appointment I would be glad to do so. My name is Alvera White....58-338-3180...Guymon, Ok. May God Bless you! AW > > Tyra, > > I am glad that helped. Just take one thing at a time and you will get to where ever you need to go. > > Who is your young surgeon making such big promises? That would worry me a little. Even the most competent of surgeons tend to be very cautious about over promising in this surgery. It is very complex and the outcomes are never guaranteed. > > One piece of information I learned was one members recounting of her exam with DrLaGrone. He told her that doing an incomplete procedure that did not address flatback in its entirety could make it impossible to ever really get to a good result. So all that is to say, be sure of what you are buying in this surgery. I know that debility and pain can cause one to jump on the first solution that appears. Please consider that this may not be the case. > > I admire your faith and the strength it gives you, however as an atheist I hope I can assure you that someone of any faith or belief system can, and do, get through this! I know that you will too. > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Dear Alvera, You sound like a sister in the Lord to me. I am strongly leaning toward seeing Dr. LaGrone and I would certainly appreciate your help! I'm so sorry about your cancer struggle. You seem to be taking all of it in stride. Thanks for your example! I don't think I got all of your phone number. Could you send it again? Thank you so much! Tyra From: alvera <alvera@...> Sent: Friday, October 23, 2009 10:56:57 AMSubject: [ ] Re: Just getting started Tyra, I'm very close being in the catagory as you are...except. ..I'm older 68. My surgery was done 23 years ago by a working partner of Dr. Harrington, his name was Fulton S. Tompkins..he eventually located in OKC. The Harrington rod and luky wire has worked beautiful for me. Now flatback has sat in and Dr. LaGrone will do the revision on me just as soon as I finish a 5 year program (1 year left)for cancer, having a double masectomy. I know about travel...because I'm a patient at MD in Houston, and live about 2 1/2 hours north east of Amarillo in Okla. Sounds like by this forum there are several good surgeons to choose from.....I would like to suggest you pray and consider an opinion from Dr. LaGrone. If I can help you in Amarillo, by meeting you at airport and taking you to your appointment I would be glad to do so. My name is Alvera White....58- 338-3180. ..Guymon, Ok.May God Bless you!AW>> Tyra,> > I am glad that helped. Just take one thing at a time and you will get to where ever you need to go.> > Who is your young surgeon making such big promises? That would worry me a little. Even the most competent of surgeons tend to be very cautious about over promising in this surgery. It is very complex and the outcomes are never guaranteed.> > One piece of information I learned was one members recounting of her exam with DrLaGrone. He told her that doing an incomplete procedure that did not address flatback in its entirety could make it impossible to ever really get to a good result. So all that is to say, be sure of what you are buying in this surgery. I know that debility and pain can cause one to jump on the first solution that appears. Please consider that this may not be the case.> > I admire your faith and the strength it gives you, however as an atheist I hope I can assure you that someone of any faith or belief system can, and do, get through this! I know that you will too.> > Take Care, Cam> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 I think we are right about that. I remember Dr. Irwin. I never did see him---he was after me.....I think my sister saw him some. She had surgery 5 years after mine and went home walking. I, of course, stayed absolutely flat for 3 months. Things have really changed. I'm very pleased you are getting so much help. I don't have flatback so cannot help you there. When you get more comfortable, let me know and we can meet. I am across the street from the medical center. Debra Tyra Bevers wrote: > > Debra, > Thanks for your reply. I did have Dr. Dickson's associate, > Wendell Irwin, do my scoliosis surgery. I'm thankful for 33 good > years! I really need a flatback specialist. I don't think we have > any in Houston. > Tyra > > ------------------------------------------------------------------------ > *From:* Debra Cosby <cosby@...> > *To:* > *Sent:* Friday, October 23, 2009 8:41:45 AM > *Subject:* Re: [ ] Just getting started > > > > Tyra, > > I'm here in Houston also. Dr. Harrington did my surgery in 1967. I'm 56 > years old. You probably saw Jessie Dickson, at some point also. Dr. > Daryl Hanson seems to be the guy to know, now. I have seen him and like > him. > > My insurance company does not cover my seeing Hanson, so I see Edith > Rumbaugh at the Spine Center at Kelsey Seybold. I just love her. She > understands spines and pain! > > Others on this list can tell you more about flatback than I. I have > other issues. I would be happy to talk to you on the phone or meet in > person. > > Debra > cosby@... <mailto:cosby%40rice.edu> > Houston, Texas > > Tyra Bevers wrote: > > > > , > > Thank you for your encouraging response to my cry. I know Jesus > > is with me but it helps to know there are others who have experienced > > what I am looking at. I live in Houston, Texas--the home of the great > > Texas Medical Center. I haven't heard of any particular specialists > > in Houston. A friend has told me of her journey with Dr Michal > > LaGrone in Amarillo. > > My husband and I are retired and I am concerned about the huge > > cost we may be facing and am concerned also about the change in health > > care our government is dangling over our heads. > > I'd appreciate any counsel. Thanks for caring. > > Tyra > > > > ------------ --------- --------- --------- --------- --------- - > > *From:* Kirkaldie <.Kirkaldie@ Comcast.net > <mailto:.Kirkaldie%40Comcast.net>> > > *To:* > <mailto: %40> > > *Sent:* Friday, October 23, 2009 6:27:33 AM > > *Subject:* Re: [ ] Just getting started > > > > > > > > Tyra, > > > > Welcome to the group! > > > > You didn't mention where in the country you are? A jumping off point > > is the Scoliosis Research Society site. There you can find docs > > usually within your own state, or a neighboring state. Their doctor > > locator is a big help. Look for aging, or adult as key words in the > > doc's description. > > > > Doc's spoken about here often, mostly are big city docs, so they are > > regional. You will hear many of the same names spoken about here, as > > these docs do revision surgery often and have proven track records, > > and patients here that have used those docs. > > > > Getting diagnosised is step one, then it's just what is possible for > > you. Most of us get more than one opinion, so it's possible to weigh > > and make the best decision as to care. Many will have to travel, as > > not all states have docs suited for our care, or up to it surgically. > > Not a time to go with a doc who is " willing " but has only done a > > couple, experience matters. > > > > So send along where you are located, and we will try and help you find > > opinion docs if not in state at least regionally. > > > > Flatback is a big word to swallow, but as in all things medical, it > > just means research, learning, finding the best doc for you, and > > seeing what is possible. Our site gives many opportunities to learn, > > grab a cup of coffee, and read, the FILES section is a great jumping > > off place. A informed patient asks the best questions, and being > > informed gives you power, as you move through all this. > > > > I'm sorry this is happening to you, I've been in the place you are > > now, but know there is hope for a better day, I sit here just a month > > from my 8 year anniversary of my own revision, doing quite well. > > > > We look forward to hearing more from you, and once again welcome! > > > > > > Colorado Springs > > > > * [ ] Just getting started > > > > > > > > I am 62 years old with a 35 year old Harrington rod in my back and > > a local orthopedic surgeon diagnosed flatback syndrome. I want to > > find the best care I can get, but don't know who to contact. Any > > help? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2009 Report Share Posted October 23, 2009 Tyra, I am in Houston, too, and I know of no great surgeons here. Kathy > > , >     Thank you for your encouraging response to my cry. I know Jesus is with me but it helps to know there are others who have experienced what I am looking at. I live in Houston, Texas--the home of the great Texas Medical Center. I haven't heard of any particular specialists in Houston. A friend has told me of her journey with Dr Michal LaGrone in Amarillo. >       My husband and I are retired and I am concerned about the huge cost we may be facing and am concerned also about the change in health care our government is dangling over our heads. >      I'd appreciate any counsel. Thanks for caring. > Tyra > > > > ________________________________ > From: Kirkaldie <.Kirkaldie@...> > > Sent: Friday, October 23, 2009 6:27:33 AM > Subject: Re: [ ] Just getting started > >  > Tyra, >  > Welcome to the group! >  > You didn't mention where in the country you are? A jumping off point is the Scoliosis Research Society site. There you can find docs usually within your own state, or a neighboring state. Their doctor locator is a big help. Look for aging, or adult as key words in the doc's description. >  > Doc's spoken about here often, mostly are big city docs, so they are regional. You will hear many of the same names spoken about here, as these docs do revision surgery often and have proven track records, and patients here that have used those docs. >  > Getting diagnosised is step one, then it's just what is possible for you. Most of us get more than one opinion, so it's possible to weigh and make the best decision as to care. Many will have to travel, as not all states have docs suited for our care, or up to it surgically. Not a time to go with a doc who is " willing " but has only done a couple, experience matters. >  > So send along where you are located, and we will try and help you find opinion docs if not in state at least regionally. >  > Flatback is a big word to swallow, but as in all things medical, it just means research, learning, finding the best doc for you, and seeing what is possible. Our site gives many opportunities to learn, grab a cup of coffee, and read, the FILES section is a great jumping off place. A informed patient asks the best questions, and being informed gives you power, as you move through all this. >  > I'm sorry this is happening to you, I've been in the place you are now, but know there is hope for a better day, I sit here just a month from my 8 year anniversary of my own revision, doing quite well. >  > We look forward to hearing more from you, and once again welcome! >  > > Colorado Springs > [ ] Just getting started > > > > > >I am 62 years old with a 35 year old Harrington rod in my back and a local orthopedic surgeon diagnosed flatback syndrome. I want to find the best care I can get, but don't know who to contact. Any help? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 Kathy, Which surgeon are you seeing for your revision surgery? Tyra From: txbluebelle <txbluebelle@...> Sent: Friday, October 23, 2009 5:56:53 PMSubject: [ ] Re: Just getting started Tyra,I am in Houston, too, and I know of no great surgeons here.Kathy>> ,> Thank you for your encouraging response to my cry. I know Jesus is with me but it helps to know there are others who have experienced what I am looking at. I live in Houston, Texas--the home of the great Texas Medical Center. I haven't heard of any particular specialists in Houston. A friend has told me of her journey with Dr Michal LaGrone in Amarillo. > My husband and I are retired and I am concerned about the huge cost we may be facing and am concerned also about the change in health care our government is dangling over our heads. > I'd appreciate any counsel. Thanks for caring.> Tyra> > > > ____________ _________ _________ __> From: Kirkaldie <.Kirkaldie@ ...>> > Sent: Friday, October 23, 2009 6:27:33 AM> Subject: Re: [ ] Just getting started> > > Tyra,> > Welcome to the group!> > You didn't mention where in the country you are? A jumping off point is the Scoliosis Research Society site. There you can find docs usually within your own state, or a neighboring state. Their doctor locator is a big help. Look for aging, or adult as key words in the doc's description. > > Doc's spoken about here often, mostly are big city docs, so they are regional. You will hear many of the same names spoken about here, as these docs do revision surgery often and have proven track records, and patients here that have used those docs.> > Getting diagnosised is step one, then it's just what is possible for you. Most of us get more than one opinion, so it's possible to weigh and make the best decision as to care. Many will have to travel, as not all states have docs suited for our care, or up to it surgically. Not a time to go with a doc who is " willing" but has only done a couple, experience matters. > > So send along where you are located, and we will try and help you find opinion docs if not in state at least regionally.> > Flatback is a big word to swallow, but as in all things medical, it just means research, learning, finding the best doc for you, and seeing what is possible. Our site gives many opportunities to learn, grab a cup of coffee, and read, the FILES section is a great jumping off place. A informed patient asks the best questions, and being informed gives you power, as you move through all this.> > I'm sorry this is happening to you, I've been in the place you are now, but know there is hope for a better day, I sit here just a month from my 8 year anniversary of my own revision, doing quite well.> > We look forward to hearing more from you, and once again welcome!> > > Colorado Springs> [ ] Just getting started> >> > > >I am 62 years old with a 35 year old Harrington rod in my back and a local orthopedic surgeon diagnosed flatback syndrome. I want to find the best care I can get, but don't know who to contact. Any help?> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2009 Report Share Posted October 25, 2009 Tyra, I saw Hanson here in Houston a few years ago. He did not recommend surgery at that time (I am now worse), and he would not be my first or even second choice. I'm not in a place where I can consider revision right now. Dr. Harrington did my original surgery. Kathy > > > > , > >     Thank you for your encouraging response to my cry. I know Jesus is with me but it helps to know there are others who have experienced what I am looking at. I live in Houston, Texas--the home of the great Texas Medical Center. I haven't heard of any particular specialists in Houston. A friend has told me of her journey with Dr Michal LaGrone in Amarillo. > >       My husband and I are retired and I am concerned about the huge cost we may be facing and am concerned also about the change in health care our government is dangling over our heads. > >      I'd appreciate any counsel. Thanks for caring. > > Tyra > > > > > > > > ____________ _________ _________ __ > > From: Kirkaldie <.Kirkaldie@ ...> > > > > Sent: Friday, October 23, 2009 6:27:33 AM > > Subject: Re: [ ] Just getting started > > > >  > > Tyra, > >  > > Welcome to the group! > >  > > You didn't mention where in the country you are? A jumping off point is the Scoliosis Research Society site. There you can find docs usually within your own state, or a neighboring state. Their doctor locator is a big help. Look for aging, or adult as key words in the doc's description. > >  > > Doc's spoken about here often, mostly are big city docs, so they are regional. You will hear many of the same names spoken about here, as these docs do revision surgery often and have proven track records, and patients here that have used those docs. > >  > > Getting diagnosised is step one, then it's just what is possible for you. Most of us get more than one opinion, so it's possible to weigh and make the best decision as to care. Many will have to travel, as not all states have docs suited for our care, or up to it surgically. Not a time to go with a doc who is " willing " but has only done a couple, experience matters. > >  > > So send along where you are located, and we will try and help you find opinion docs if not in state at least regionally. > >  > > Flatback is a big word to swallow, but as in all things medical, it just means research, learning, finding the best doc for you, and seeing what is possible. Our site gives many opportunities to learn, grab a cup of coffee, and read, the FILES section is a great jumping off place. A informed patient asks the best questions, and being informed gives you power, as you move through all this. > >  > > I'm sorry this is happening to you, I've been in the place you are now, but know there is hope for a better day, I sit here just a month from my 8 year anniversary of my own revision, doing quite well. > >  > > We look forward to hearing more from you, and once again welcome! > >  > > > > Colorado Springs > > [ ] Just getting started > > > > > > > > >I am 62 years old with a 35 year old Harrington rod in my back and a local orthopedic surgeon diagnosed flatback syndrome. I want to find the best care I can get, but don't know who to contact. Any help? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 I sent an email a few minutes ago....sorry to be so slow....I have been with my mother in OKC for nearly 3 weeks. I will leave and go again this Sat. Nov 7th. Will be away from my computer and phone... Yes!...I am so grateful that in whatever circumstance we face...that God has promised to never leave us or forsake us..... Take Care, Alvera [ ] Re: Just getting started Tyra, I'm very close being in the catagory as you are...except. ..I'm older 68. My surgery was done 23 years ago by a working partner of Dr. Harrington, his name was Fulton S. Tompkins..he eventually located in OKC. The Harrington rod and luky wire has worked beautiful for me. Now flatback has sat in and Dr. LaGrone will do the revision on me just as soon as I finish a 5 year program (1 year left)for cancer, having a double masectomy. I know about travel...because I'm a patient at MD in Houston, and live about 2 1/2 hours north east of Amarillo in Okla. Sounds like by this forum there are several good surgeons to choose from.....I would like to suggest you pray and consider an opinion from Dr. LaGrone. If I can help you in Amarillo, by meeting you at airport and taking you to your appointment I would be glad to do so. My name is Alvera White....58- 338-3180. ..Guymon, Ok.May God Bless you!AW>> Tyra,> > I am glad that helped. Just take one thing at a time and you will get to where ever you need to go.> > Who is your young surgeon making such big promises? That would worry me a little. Even the most competent of surgeons tend to be very cautious about over promising in this surgery. It is very complex and the outcomes are never guaranteed.> > One piece of information I learned was one members recounting of her exam with DrLaGrone. He told her that doing an incomplete procedure that did not address flatback in its entirety could make it impossible to ever really get to a good result. So all that is to say, be sure of what you are buying in this surgery. I know that debility and pain can cause one to jump on the first solution that appears. Please consider that this may not be the case.> > I admire your faith and the strength it gives you, however as an atheist I hope I can assure you that someone of any faith or belief system can, and do, get through this! I know that you will too.> > Take Care, Cam> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 When I started this diet with my son the one thing that surprised me the most was the amount of weight he lost. It really scared me because he was already so small and got smaller. Then he started to gain weight after cooking a lot with duck fat, ghee, and eating the bone in broths that he loves to have every day. So you MIGHT see that (weight loss) but if you do, stick with it and they will start to gain weight and begin to look better than they did before, if that makes any sense. I would still go through the into diet. I would probably only spend two or three days on it, but I would still go through it. I would not continue the hot dogs because of that questionable ingredient "spices". If the hot dog producer gets a spice blend for the hot dogs from another company, on their label they are not required to list what spices were used to create the spice blend, they only have to list "spices". Who knows what kind of spices those are,it could be soy, gluten, or an artificial color etc. Be mindful of the self limiting diet and the desire to only eat these hot dogs for some reason. That very well could be an indicator that he's getting something he's not supposed to and is loving it. I would do the food sensitivity test that's mentioned on the website and in the book at night with eggs on my son that was sensitive and see if the sensitivity still persists. That's just one way to do it, I am sure their are others. Here are some websites that answered a lot of my questions and help me prepare meals, of course I make substitutions to the recipes when necessary: http://www.scdrecipe.com/recipes/ http://www.thenourishinggourmet.com/ http://www.gaps.me/preview/?page_id=32 love this one: http://kellythekitchenkop.com/category/gaps-diet-gut-health My two cents, Chinwe From: pvenet <pvenet@...>Subject: [ ] Just getting Started Date: Monday, December 28, 2009, 8:28 AM I have twin 5 year old boys who have been GFCF for quite awhile now and their leaky gut has not healed. Our DAN recommended the GAPS diet. We have not started yet, and I have ordered the books. I am reading up on it as much as possible. Is it necessary to start with the intro diet? My boys do not have diarrea.One of my boys is extremely picky when it comes to food and has a very limited diet. He eats hot dogs quite often, but they are all beef from an organic farm and are GFCF, nitrate free, soy free, and preservative free. The only added ingredients are dehydrated mustard, salt,spices, smoke and garlic. I was wondering if he could continue eating these?Also, my other son had tested sensitive to eggs very early on when we started biomed and we have stayed away from eggs for 2 years now, for both boys. A lot of recipes call for eggs, so I was wondering at what point could we try to re-introduce them?Any comments would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
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