Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Welcome! I suppose this would maybe be conversation better saved for another list, but what was the water birth like? My daughter was born at home...and if God is gracious and we conceive again, I am very interested in water birth. Would you share? Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Welcome I just wanted to tell you what a wonderful story! I support your decisions and welcome you to learn more! I am Dawn new member intro > From: Anjin327@... > > Hi! I just joined the list after becoming pregnant with my second > child...unexpectedly...17 years after my first child. > 17 years ago I had my first daughter at a Birth Home with no drugs...was home > 3 hours later. I breast fed her until she was 2 and a half years and she > slept with us for quite some time. All these things were considered rather > radical at the time although not so much now. The only thing I regret doing > was vaccinating her. I did not know how many problems there were and did not > have access to any information about vaccines. I should have known though > because my husband was given vaccines when he went to West Point and swelled > up and got very ill. > We were fortunate that there were no serious problems when my daughter was > vaccinated...though I would not have given her the vaccines if I had known > what I know now. > One interesting thing did happen to us though ...When our first daughter was > under 2 years...we did not have much money so we took her to Public Health to > have her check ups. I was asked if I wanted to give her the new vaccine that > had just been approved...Chicken Pox. I hadn't heard about it and told them I > wanted to think about it first. I was told it was a very good thing to give > to her and safe. That week I read in the back part of the newspaper that a > new vaccine was being TESTED on a group of children...Chicken Pox. Yes! It > was being tested on poor children...and they were not even telling the > parents that they were using their children as guinea pigs. Needless to say I > refused to give it to my daughter. > I do not want to vaccinate my new baby and I am interested in > alternatives...I have studied herbal medicine for myself and family and have > worked on keeping my immune system up in a variety of ways. By the way...my > new daughter was born at a Birth Center...no drugs and a four hour > labor...and she was born under water. We plan to breast feed for a couple > years if possible and she sleeps with us too...and she is a joy to be around! > Sorry about the long post...I use to be a professional storyteller...we tend > to get long winded :0). > Anjin > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > > Come join one of nearly 160,000 e-mail communities at ONElist! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Off the topic... on the water birth issue; I too had a water birth at home and I must say it was wonderful! The water was extremely relaxing and it seemed to soften all the parts that need to stretch! I labored in and out of this warm labor pool and when it came time to push I wanted back in the water. Two hours later my son emerged and floated right to the surface for what seemed like the most gentle birthing experience. I personally, cannot imagine giving birth on dry land. One note... per my midwife... it is important to ensure the baby comes right to the surface after being born. She had another lady who had a water birth who was stuck on keeping the baby submerged and the baby ended up aspirating water and had complications... duh. Anyway, if you want more details you can email me privately. Sherri Jefkarp@... wrote: > From: Jefkarp@... > > Welcome! > I suppose this would maybe be conversation better saved for another list, but > what was the water birth like? My daughter was born at home...and if God is > gracious and we conceive again, I am very interested in water birth. Would > you share? > Joan > > ------------------------------------------------------------------------ > With more than 18 million e-mails exchanged daily... > > ...ONElist is THE place where the world talks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Hi Sam, Welcome to our group. Please go and read this article about Trudie Lobban and her daughter's seizures. If it sounds like what your daughter is experiencing, you can contact her from that web page. Zoe http://www.indiana.edu/~pietsch/ras.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 > Thanks for the link, however this is not my daughter " today " . When she was 3wks up until the age of around 3 it fits her. At that time she was diagnosed with pallid breath holding. Hi Sam, > Welcome to our group. Please go and read this article about Trudie > Lobban and her daughter's seizures. If it sounds like what your > daughter is experiencing, you can contact her from that web page. > Zoe > > http://www.indiana.edu/~pietsch/ras.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Sam, Reflex Anoxic Seizures are also called pallid breath holding spells. Is your daughter under the care of a cardiologist? If she was diagnosed with pallid breath holding spells was she not further evaluated for the heart conditions that may cause them? Pallid breath holding spells are not some kind of a tantrum or behavior problem. The seizures are real seizures, but it is not epilepsy when they are being set off by a vagus nerve dysfunction as with RAS or a cardiac disorder. I urge you again to contact Trudie Lobban from her web site. She has a lot of knowledge in this area (http://www.rasstars.org.uk/). These links will lead you to more information. The second one is a report on Dr. Edell at the Mayo clinic, a specialist in this area. Zoe Children's - Faxnotes - April 29, 1996 .... Pallid breath-holding spells, also known as reflex anoxic seizures, most often ... Those with a typical syncope, or typical episodes that are sufficiently frequent ... www.childrens.com/faxnotes/fx042996.htm - 8k - Cached - Similar pages abc7news.com: Keeping Children Breathing .... Dr. Dean Edell's House Calls. THE RESEARCH: Ten pediatric patients with apparent pallid breath-holding spells associated with bradycardia (critical slowing of ... http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > > Thanks for the link, however this is not my daughter " today " . When > she was 3wks up until the age of around 3 it fits her. At that time > she was diagnosed with pallid breath holding. > http://www.indiana.edu/~pietsch/ras.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Hi Zoe, Thanks for the links..She was diagnosed by a cardiologist with pallid breath holding at 28 months. I was told that she would most likely eventually outgrow it, and she did. At that time she would just be sitting in the floor playing or something and fall over, not breathing...she was NEVER throwing a tantrum when she did this. The situation we are facing today is much different. The staring spells have always been present and are getting worse, which her EEG last week as i said was abnormal. She is seeing a neuro. on the 26th. Her ped. had me take her to see a psychiatrist because she has also been hearing voices and hallucinating...well this dr. thinks that she might have schizoaffective disorder but wanted to wait til she sees the neuro before starting any meds...(i didn't want meds either at this time) said that he wanted to get the seizures under control first and have a MRI to make sure there was no tumor there that was causing her hallucinations and such. Does anyone on this list live in the Milwaukee Wis. area and happen to know of dr. Zupont (s/p?) if so and you have positive or negative experiences to share that would be great. --- zoe88025 <Zll51@...> wrote: > Sam, > > Reflex Anoxic Seizures are also called pallid > breath holding > spells. Is your daughter under the care of a > cardiologist? If she was > diagnosed with pallid breath holding spells was she > not further > evaluated for the heart conditions that may cause > them? Pallid > breath holding spells are not some kind of a tantrum > or behavior > problem. > > The seizures are real seizures, but it is not > epilepsy when they are > being set off by a vagus nerve dysfunction as with > RAS or a cardiac > disorder. I urge you again to contact Trudie Lobban > from her web > site. She has a lot of knowledge in this area > (http://www.rasstars.org.uk/). These links will > lead you to more > information. The second one is a report on Dr. Edell > at the Mayo > clinic, a specialist in this area. > > Zoe > > Children's - Faxnotes - April 29, 1996 > ... Pallid breath-holding spells, also known as > reflex anoxic > seizures, most often ... Those > with a typical syncope, or typical episodes that are > sufficiently > frequent ... > www.childrens.com/faxnotes/fx042996.htm - 8k - > Cached - Similar pages > > abc7news.com: Keeping Children Breathing > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten > pediatric > patients with apparent > pallid breath-holding spells associated with > bradycardia (critical > slowing of ... > http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > > > > > > Thanks for the link, however this is not my > daughter " today " . > When > > she was 3wks up until the age of around 3 it fits > her. At that time > > she was diagnosed with pallid breath holding. > > > http://www.indiana.edu/~pietsch/ras.html > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Hi Sam, You must be worried sick yourself with all the uncertainty. Many of the symptoms you describe are also fairly typical of seizures, hallucinations, hearing sounds, bizarre behavior, etc. Does your ped know much about audiogenic and olfactory seizures, common with partial seizure disorders? And you already know the EEG is abnormal. Even if she doesn't have a tumor, there are many things that might account for her symptoms, like food and chemical sensitivities. Antipsychotic drugs may lower the seizure threshold, which could then worsen her seizures, not to mention other side effects. Did she also have a thorough work up for allergies? These can play havoc with her nervous system. You may find this group to be helpful in exploring possibilities: http://www.parentsofallergicchildren.org/ This link is to an article on brain allergies: http://www.alternativementalhealth.com/articles/brainallergies.htm It may be worth a shot to contact this lab and ask them what sort of conditions should be checked out and excluded before assuming your daughter has schizoaffective disorder. Also, you can read Mark Schauss's account of his daughter's experience with seizure on his web site. He is in this group and may be another good resource for you. His daughter now has a normal EEG if you saw his post. http://www.carbonbased.com/EpilepsyJourney.htm Zoe -- In @y..., Vernetti <svernetti73@y...> wrote: > Hi Zoe, > > Thanks for the links..She was diagnosed by a > cardiologist with pallid breath holding at 28 months. > I was told that she would most likely eventually > outgrow it, and she did. At that time she would just > be sitting in the floor playing or something and fall > over, not breathing...she was NEVER throwing a tantrum > when she did this. The situation we are facing today > is much different. The staring spells have always been > present and are getting worse, which her EEG last week > as i said was abnormal. She is seeing a neuro. on the > 26th. Her ped. had me take her to see a psychiatrist > because she has also been hearing voices and > hallucinating...well this dr. thinks that she might > have schizoaffective disorder but wanted to wait til > she sees the neuro before starting any meds...(i > didn't want meds either at this time) said that he > wanted to get the seizures under control first and > have a MRI to make sure there was no tumor there that > was causing her hallucinations and such. Does anyone > on this list live in the Milwaukee Wis. area and > happen to know of dr. Zupont (s/p?) if so and you > have positive or negative experiences to share that > would be great. > --- zoe88025 <Zll51@h...> wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Dear Sam, I am certainly not the expert Zoe is and I'm so grateful for all of the helpful information she send us. As I was reading what you wrote, though, a thought struck me. Deficiencies in vitamin B-12 have been linked to schizophrenia and to epilepsy. I struggle with a B-12 impairment constantly, and when my B-12 is especially low, I find that I have emotional problems. Of course, heavy metals, chemicals and aspirin can affect the body's stores of B-12. Has your precious child had her B-12 levels checked? Maybe this is irrelevant, but so many people (including me) have reported improvement from adding B vitamins that I thought I'd mention it. Of course, it is always best to use a B complex since the B vitamins work in concert with one another. I hope this is helpful to you. Best wishes, Carrol Vernetti <svernetti73@...> wrote: Hi Zoe, Thanks for the links..She was diagnosed by a cardiologist with pallid breath holding at 28 months. I was told that she would most likely eventually outgrow it, and she did. At that time she would just be sitting in the floor playing or something and fall over, not breathing...she was NEVER throwing a tantrum when she did this. The situation we are facing today is much different. The staring spells have always been present and are getting worse, which her EEG last week as i said was abnormal. She is seeing a neuro. on the 26th. Her ped. had me take her to see a psychiatrist because she has also been hearing voices and hallucinating...well this dr. thinks that she might have schizoaffective disorder but wanted to wait til she sees the neuro before starting any meds...(i didn't want meds either at this time) said that he wanted to get the seizures under control first and have a MRI to make sure there was no tumor there that was causing her hallucinations and such. Does anyone on this list live in the Milwaukee Wis. area and happen to know of dr. Zupont (s/p?) if so and you have positive or negative experiences to share that would be great. --- zoe88025 <Zll51@...> wrote: > Sam, > > Reflex Anoxic Seizures are also called pallid > breath holding > spells. Is your daughter under the care of a > cardiologist? If she was > diagnosed with pallid breath holding spells was she > not further > evaluated for the heart conditions that may cause > them? Pallid > breath holding spells are not some kind of a tantrum > or behavior > problem. > > The seizures are real seizures, but it is not > epilepsy when they are > being set off by a vagus nerve dysfunction as with > RAS or a cardiac > disorder. I urge you again to contact Trudie Lobban > from her web > site. She has a lot of knowledge in this area > (http://www.rasstars.org.uk/). These links will > lead you to more > information. The second one is a report on Dr. Edell > at the Mayo > clinic, a specialist in this area. > > Zoe > > Children's - Faxnotes - April 29, 1996 > ... Pallid breath-holding spells, also known as > reflex anoxic > seizures, most often ... Those > with a typical syncope, or typical episodes that are > sufficiently > frequent ... > www.childrens.com/faxnotes/fx042996.htm - 8k - > Cached - Similar pages > > abc7news.com: Keeping Children Breathing > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten > pediatric > patients with apparent > pallid breath-holding spells associated with > bradycardia (critical > slowing of ... > http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > > > > > > Thanks for the link, however this is not my > daughter " today " . > When > > she was 3wks up until the age of around 3 it fits > her. At that time > > she was diagnosed with pallid breath holding. > > > http://www.indiana.edu/~pietsch/ras.html > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Carol, One side note on the B12 issue I have seen. People can test high for serum B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular Volume) and Methylmalonate, both excellent markers for functional B12 assessment. The important term here is functional assessment. If the body is not utilizing the B12 properly and the functional measurements are off then one needs to investigate other reasons, some of which you mention; heavy metals, chemicals, aspirin (a horrible drug) and others. You are also right on with the statement about needing other B vitamins to work synergistically with each other. In health, Mark Schauss www.carbonbased.com Re: [ ] Re: New Member Intro > > Dear Sam, > I am certainly not the expert Zoe is and I'm so grateful for all of the helpful information she send us. As I was reading what you wrote, though, a thought struck me. Deficiencies in vitamin B-12 have been linked to schizophrenia and to epilepsy. I struggle with a B-12 impairment constantly, and when my B-12 is especially low, I find that I have emotional problems. Of course, heavy metals, chemicals and aspirin can affect the body's stores of B-12. Has your precious child had her B-12 levels checked? > > Maybe this is irrelevant, but so many people (including me) have reported improvement from adding B vitamins that I thought I'd mention it. Of course, it is always best to use a B complex since the B vitamins work in concert with one another. > > I hope this is helpful to you. > Best wishes, > Carrol > > > Vernetti <svernetti73@...> wrote: Hi Zoe, > > Thanks for the links..She was diagnosed by a > cardiologist with pallid breath holding at 28 months. > I was told that she would most likely eventually > outgrow it, and she did. At that time she would just > be sitting in the floor playing or something and fall > over, not breathing...she was NEVER throwing a tantrum > when she did this. The situation we are facing today > is much different. The staring spells have always been > present and are getting worse, which her EEG last week > as i said was abnormal. She is seeing a neuro. on the > 26th. Her ped. had me take her to see a psychiatrist > because she has also been hearing voices and > hallucinating...well this dr. thinks that she might > have schizoaffective disorder but wanted to wait til > she sees the neuro before starting any meds...(i > didn't want meds either at this time) said that he > wanted to get the seizures under control first and > have a MRI to make sure there was no tumor there that > was causing her hallucinations and such. Does anyone > on this list live in the Milwaukee Wis. area and > happen to know of dr. Zupont (s/p?) if so and you > have positive or negative experiences to share that > would be great. > --- zoe88025 <Zll51@...> wrote: > > Sam, > > > > Reflex Anoxic Seizures are also called pallid > > breath holding > > spells. Is your daughter under the care of a > > cardiologist? If she was > > diagnosed with pallid breath holding spells was she > > not further > > evaluated for the heart conditions that may cause > > them? Pallid > > breath holding spells are not some kind of a tantrum > > or behavior > > problem. > > > > The seizures are real seizures, but it is not > > epilepsy when they are > > being set off by a vagus nerve dysfunction as with > > RAS or a cardiac > > disorder. I urge you again to contact Trudie Lobban > > from her web > > site. She has a lot of knowledge in this area > > (http://www.rasstars.org.uk/). These links will > > lead you to more > > information. The second one is a report on Dr. Edell > > at the Mayo > > clinic, a specialist in this area. > > > > Zoe > > > > Children's - Faxnotes - April 29, 1996 > > ... Pallid breath-holding spells, also known as > > reflex anoxic > > seizures, most often ... Those > > with a typical syncope, or typical episodes that are > > sufficiently > > frequent ... > > www.childrens.com/faxnotes/fx042996.htm - 8k - > > Cached - Similar pages > > > > abc7news.com: Keeping Children Breathing > > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten > > pediatric > > patients with apparent > > pallid breath-holding spells associated with > > bradycardia (critical > > slowing of ... > > > http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > > > > > > > > > > Thanks for the link, however this is not my > > daughter " today " . > > When > > > she was 3wks up until the age of around 3 it fits > > her. At that time > > > she was diagnosed with pallid breath holding. > > > > > http://www.indiana.edu/~pietsch/ras.html > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 mark -- can you briefly describe the kind of testing you do? : -subscribe > > Group page: > Group Archives: messages/ > > You are receiving this email because you elected to subscribe to the group on 's groups. By joining the list you agree to hold yourself FULLY responsible FOR yourself! Have a nice day ! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Dear Mark, I'm so glad you mentioned that! There may be many people out there who are having tests which show their B-12 levels to be fine, when their bodies aren't using the vitamins at all! The truth is that one doctor kept testing me for B-12 deficiencies and found none, and he implied that my improvement with B vitamins was all in my head. It was not until I saw another doctor who conducted another test that my problem was discovered. (I wish I could remember the name of the test!) Have you ever thought about writing a book relating the information you've discovered and the protocols you've utilized? I would sure like for my doctors to sit down and talk with you for awhile! Best wishes, Carrol Mark Schauss <schauss@...> wrote: Carol, One side note on the B12 issue I have seen. People can test high for serum B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular Volume) and Methylmalonate, both excellent markers for functional B12 assessment. The important term here is functional assessment. If the body is not utilizing the B12 properly and the functional measurements are off then one needs to investigate other reasons, some of which you mention; heavy metals, chemicals, aspirin (a horrible drug) and others. You are also right on with the statement about needing other B vitamins to work synergistically with each other. In health, Mark Schauss www.carbonbased.com Re: [ ] Re: New Member Intro > > Dear Sam, > I am certainly not the expert Zoe is and I'm so grateful for all of the helpful information she send us. As I was reading what you wrote, though, a thought struck me. Deficiencies in vitamin B-12 have been linked to schizophrenia and to epilepsy. I struggle with a B-12 impairment constantly, and when my B-12 is especially low, I find that I have emotional problems. Of course, heavy metals, chemicals and aspirin can affect the body's stores of B-12. Has your precious child had her B-12 levels checked? > > Maybe this is irrelevant, but so many people (including me) have reported improvement from adding B vitamins that I thought I'd mention it. Of course, it is always best to use a B complex since the B vitamins work in concert with one another. > > I hope this is helpful to you. > Best wishes, > Carrol > > > Vernetti <svernetti73@...> wrote: Hi Zoe, > > Thanks for the links..She was diagnosed by a > cardiologist with pallid breath holding at 28 months. > I was told that she would most likely eventually > outgrow it, and she did. At that time she would just > be sitting in the floor playing or something and fall > over, not breathing...she was NEVER throwing a tantrum > when she did this. The situation we are facing today > is much different. The staring spells have always been > present and are getting worse, which her EEG last week > as i said was abnormal. She is seeing a neuro. on the > 26th. Her ped. had me take her to see a psychiatrist > because she has also been hearing voices and > hallucinating...well this dr. thinks that she might > have schizoaffective disorder but wanted to wait til > she sees the neuro before starting any meds...(i > didn't want meds either at this time) said that he > wanted to get the seizures under control first and > have a MRI to make sure there was no tumor there that > was causing her hallucinations and such. Does anyone > on this list live in the Milwaukee Wis. area and > happen to know of dr. Zupont (s/p?) if so and you > have positive or negative experiences to share that > would be great. > --- zoe88025 <Zll51@...> wrote: > > Sam, > > > > Reflex Anoxic Seizures are also called pallid > > breath holding > > spells. Is your daughter under the care of a > > cardiologist? If she was > > diagnosed with pallid breath holding spells was she > > not further > > evaluated for the heart conditions that may cause > > them? Pallid > > breath holding spells are not some kind of a tantrum > > or behavior > > problem. > > > > The seizures are real seizures, but it is not > > epilepsy when they are > > being set off by a vagus nerve dysfunction as with > > RAS or a cardiac > > disorder. I urge you again to contact Trudie Lobban > > from her web > > site. She has a lot of knowledge in this area > > (http://www.rasstars.org.uk/). These links will > > lead you to more > > information. The second one is a report on Dr. Edell > > at the Mayo > > clinic, a specialist in this area. > > > > Zoe > > > > Children's - Faxnotes - April 29, 1996 > > ... Pallid breath-holding spells, also known as > > reflex anoxic > > seizures, most often ... Those > > with a typical syncope, or typical episodes that are > > sufficiently > > frequent ... > > www.childrens.com/faxnotes/fx042996.htm - 8k - > > Cached - Similar pages > > > > abc7news.com: Keeping Children Breathing > > ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten > > pediatric > > patients with apparent > > pallid breath-holding spells associated with > > bradycardia (critical > > slowing of ... > > > http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > > > > > > > > > > Thanks for the link, however this is not my > > daughter " today " . > > When > > > she was 3wks up until the age of around 3 it fits > > her. At that time > > > she was diagnosed with pallid breath holding. > > > > > http://www.indiana.edu/~pietsch/ras.html > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Mark, Your B12/folate comments caught my attention. My daughter's B12/folate levels are excessively high (I recall the B12 was >2500 with 1100 as the upper range). Serum levels have been tested twice and results were high both times. When I queried the doctor about it - even asking if high levels might inidicate a malabsorption or other metabolic problem that was preventing her from utililzing the nutrients - he just said, " We only worry if the levels are low. " Her MCV has not been elevated. Perhaps we should test for methylmalonate - is that a serum test and are there any other markers that might help elucidate the problem? Thanks so much, Patti On 6/26/02 1:10 PM, " Mark Schauss " <schauss@...> wrote: > Carol, > > One side note on the B12 issue I have seen. People can test high for serum > B12 (and folate for that matter) yet have elevated MCV (Mean Corpuscular > Volume) and Methylmalonate, both excellent markers for functional B12 > assessment. The important term here is functional assessment. If the body > is not utilizing the B12 properly and the functional measurements are off > then one needs to investigate other reasons, some of which you mention; > heavy metals, chemicals, aspirin (a horrible drug) and others. You are also > right on with the statement about needing other B vitamins to work > synergistically with each other. > > In health, > Mark Schauss > www.carbonbased.com > > Re: [ ] Re: New Member Intro > > >> >> Dear Sam, >> I am certainly not the expert Zoe is and I'm so grateful for all of the > helpful information she send us. As I was reading what you wrote, though, a > thought struck me. Deficiencies in vitamin B-12 have been linked to > schizophrenia and to epilepsy. I struggle with a B-12 impairment > constantly, and when my B-12 is especially low, I find that I have emotional > problems. Of course, heavy metals, chemicals and aspirin can affect the > body's stores of B-12. Has your precious child had her B-12 levels checked? >> >> Maybe this is irrelevant, but so many people (including me) have reported > improvement from adding B vitamins that I thought I'd mention it. Of > course, it is always best to use a B complex since the B vitamins work in > concert with one another. >> >> I hope this is helpful to you. >> Best wishes, >> Carrol >> >> >> Vernetti <svernetti73@...> wrote: Hi Zoe, >> >> Thanks for the links..She was diagnosed by a >> cardiologist with pallid breath holding at 28 months. >> I was told that she would most likely eventually >> outgrow it, and she did. At that time she would just >> be sitting in the floor playing or something and fall >> over, not breathing...she was NEVER throwing a tantrum >> when she did this. The situation we are facing today >> is much different. The staring spells have always been >> present and are getting worse, which her EEG last week >> as i said was abnormal. She is seeing a neuro. on the >> 26th. Her ped. had me take her to see a psychiatrist >> because she has also been hearing voices and >> hallucinating...well this dr. thinks that she might >> have schizoaffective disorder but wanted to wait til >> she sees the neuro before starting any meds...(i >> didn't want meds either at this time) said that he >> wanted to get the seizures under control first and >> have a MRI to make sure there was no tumor there that >> was causing her hallucinations and such. Does anyone >> on this list live in the Milwaukee Wis. area and >> happen to know of dr. Zupont (s/p?) if so and you >> have positive or negative experiences to share that >> would be great. >> --- zoe88025 <Zll51@...> wrote: >>> Sam, >>> >>> Reflex Anoxic Seizures are also called pallid >>> breath holding >>> spells. Is your daughter under the care of a >>> cardiologist? If she was >>> diagnosed with pallid breath holding spells was she >>> not further >>> evaluated for the heart conditions that may cause >>> them? Pallid >>> breath holding spells are not some kind of a tantrum >>> or behavior >>> problem. >>> >>> The seizures are real seizures, but it is not >>> epilepsy when they are >>> being set off by a vagus nerve dysfunction as with >>> RAS or a cardiac >>> disorder. I urge you again to contact Trudie Lobban >>> from her web >>> site. She has a lot of knowledge in this area >>> (http://www.rasstars.org.uk/). These links will >>> lead you to more >>> information. The second one is a report on Dr. Edell >>> at the Mayo >>> clinic, a specialist in this area. >>> >>> Zoe >>> >>> Children's - Faxnotes - April 29, 1996 >>> ... Pallid breath-holding spells, also known as >>> reflex anoxic >>> seizures, most often ... Those >>> with a typical syncope, or typical episodes that are >>> sufficiently >>> frequent ... >>> www.childrens.com/faxnotes/fx042996.htm - 8k - >>> Cached - Similar pages >>> >>> abc7news.com: Keeping Children Breathing >>> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten >>> pediatric >>> patients with apparent >>> pallid breath-holding spells associated with >>> bradycardia (critical >>> slowing of ... >>> >> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html >>> >>> >>> >>>>> Thanks for the link, however this is not my >>> daughter " today " . >>> When >>>> she was 3wks up until the age of around 3 it fits >>> her. At that time >>>> she was diagnosed with pallid breath holding. >>>> >>> http://www.indiana.edu/~pietsch/ras.html >>> >>> >> >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Patti, Methymalonate is best tested as part of a urine organic acid test. In health, Mark Schauss www.carbonbased.com Re: [ ] Re: New Member Intro > > > > > >> > >> Dear Sam, > >> I am certainly not the expert Zoe is and I'm so grateful for all of the > > helpful information she send us. As I was reading what you wrote, though, a > > thought struck me. Deficiencies in vitamin B-12 have been linked to > > schizophrenia and to epilepsy. I struggle with a B-12 impairment > > constantly, and when my B-12 is especially low, I find that I have emotional > > problems. Of course, heavy metals, chemicals and aspirin can affect the > > body's stores of B-12. Has your precious child had her B-12 levels checked? > >> > >> Maybe this is irrelevant, but so many people (including me) have reported > > improvement from adding B vitamins that I thought I'd mention it. Of > > course, it is always best to use a B complex since the B vitamins work in > > concert with one another. > >> > >> I hope this is helpful to you. > >> Best wishes, > >> Carrol > >> > >> > >> Vernetti <svernetti73@...> wrote: Hi Zoe, > >> > >> Thanks for the links..She was diagnosed by a > >> cardiologist with pallid breath holding at 28 months. > >> I was told that she would most likely eventually > >> outgrow it, and she did. At that time she would just > >> be sitting in the floor playing or something and fall > >> over, not breathing...she was NEVER throwing a tantrum > >> when she did this. The situation we are facing today > >> is much different. The staring spells have always been > >> present and are getting worse, which her EEG last week > >> as i said was abnormal. She is seeing a neuro. on the > >> 26th. Her ped. had me take her to see a psychiatrist > >> because she has also been hearing voices and > >> hallucinating...well this dr. thinks that she might > >> have schizoaffective disorder but wanted to wait til > >> she sees the neuro before starting any meds...(i > >> didn't want meds either at this time) said that he > >> wanted to get the seizures under control first and > >> have a MRI to make sure there was no tumor there that > >> was causing her hallucinations and such. Does anyone > >> on this list live in the Milwaukee Wis. area and > >> happen to know of dr. Zupont (s/p?) if so and you > >> have positive or negative experiences to share that > >> would be great. > >> --- zoe88025 <Zll51@...> wrote: > >>> Sam, > >>> > >>> Reflex Anoxic Seizures are also called pallid > >>> breath holding > >>> spells. Is your daughter under the care of a > >>> cardiologist? If she was > >>> diagnosed with pallid breath holding spells was she > >>> not further > >>> evaluated for the heart conditions that may cause > >>> them? Pallid > >>> breath holding spells are not some kind of a tantrum > >>> or behavior > >>> problem. > >>> > >>> The seizures are real seizures, but it is not > >>> epilepsy when they are > >>> being set off by a vagus nerve dysfunction as with > >>> RAS or a cardiac > >>> disorder. I urge you again to contact Trudie Lobban > >>> from her web > >>> site. She has a lot of knowledge in this area > >>> (http://www.rasstars.org.uk/). These links will > >>> lead you to more > >>> information. The second one is a report on Dr. Edell > >>> at the Mayo > >>> clinic, a specialist in this area. > >>> > >>> Zoe > >>> > >>> Children's - Faxnotes - April 29, 1996 > >>> ... Pallid breath-holding spells, also known as > >>> reflex anoxic > >>> seizures, most often ... Those > >>> with a typical syncope, or typical episodes that are > >>> sufficiently > >>> frequent ... > >>> www.childrens.com/faxnotes/fx042996.htm - 8k - > >>> Cached - Similar pages > >>> > >>> abc7news.com: Keeping Children Breathing > >>> ... Dr. Dean Edell's House Calls. THE RESEARCH: Ten > >>> pediatric > >>> patients with apparent > >>> pallid breath-holding spells associated with > >>> bradycardia (critical > >>> slowing of ... > >>> > >> http://abclocal.go.com/kgo/health/042302_he_hold_breath_research.html > >>> > >>> > >>> > >>>>> Thanks for the link, however this is not my > >>> daughter " today " . > >>> When > >>>> she was 3wks up until the age of around 3 it fits > >>> her. At that time > >>>> she was diagnosed with pallid breath holding. > >>>> > >>> http://www.indiana.edu/~pietsch/ras.html > >>> > >>> > >> > >> > >> __________________________________________________ > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 I have been getting rib cage pain latley also when I try to stretch my arms in the air. The restless leg and shoulder syndrome too. I also have high blood pressure (Cardizem 120 mg) and high Colesterol (Lipitor 10 mg). I just went for my 4th Remicade infusion yesterday. For me this is a wonderful drug. I will not have the liberty of ENBREL until later, but the Remicade works well. I have had absolutly NO SIDE EFFECTS from Remicade. I know everyone is different, but Remicade works, and it works well. Good Luck, in Atlanta, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 > I have been getting rib cage pain latley also when I > try to stretch my arms in the air. > The restless leg and shoulder syndrome too. > I also have high blood pressure (Cardizem 120 mg) and > high Colesterol (Lipitor 10 mg). > I just went for my 4th Remicade infusion yesterday. > For me this is a wonderful drug. I will not have the > liberty of ENBREL until later, but the Remicade works > well. I have had absolutly NO SIDE EFFECTS from > Remicade. I know everyone is different, but Remicade > works, and it works well. > Good Luck, > in Atlanta, GA , thanks to yours and Meghan's comments, along with other resources I've been reading, I have gotten up the courage to call my Dr. and try to get insurance approval for Remicade. Any relief at this point is welcome. Thanks again for the encouragement. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 I think you have seen the bounce back effect of coming off prednisone. A lot of authorities warn that prednisone is bad for psoriasis sufferers. When you come off the P can get quite bad as you have found - they even describe a pustulating dermatitis that is possible after corticosteroid use. I was on MTX and vitamin 'P' (prednisone) but without a diagnosis and showing no P. When my rheumie weaned me off both drugs, I broke out all over with every type of P somewhere on my body. A positive diagnosis of PA quickly ensued. I think the red spots are called gutturate psoriasis. Sometimes they will join up and form scales. Sometimes they go away. Sometimes they stay and just itch like mad!! I was at 40% body coverage with weeping skin in many places during the post-prednisone break-out. I am now at 5%-10% coverage with some gutturate and some scaly P and occasionally a little of the inverse P re-appears in folds. I am not clear again but it did get much better after I got back on MTX. Good luck and keep off the vitamin 'P'. On Thursday, September 19, 2002, at 01:59 AM, robertbresson2001 wrote: > Hi group, > > I have been lurking for a few months now, and > thought it was about time to introduce myself. > > I am a 43 year old male. My P started at > about age 24, and has gradually increased > to more areas, now including scalp, ears, > and groin. I also have characteristic > nail problems (onycholysis). A couple of > years ago, my jaw started acting up in > terms of both pain and restricted range of > motion. After visiting a dentist and an > internist, an oral surgeon refered me to > a rheumatologist, who diagnosed PA on the > basis of x-rays showing sacroiliitis. > I also have pain/swelling in my right 5th > finger DIP joint, and 4th and 5th left toes, > plus some neck pain and mild rib cage pain. > > My rheumy started me on Naprosyn, but I > couldn't tolerate the stomach pain, so we > switched me to 200 mg Celebrex. That plus > a bite splint for my jaw have been reasonably > helpful over the past few months. > > One thing in particular has surprised me. My > Rheumy claims that my jaw and finger problems > are actually osteoarthritis, not the PA, based > on a lack of erosion in the x-rays. This seems > weird to me -- any thoughts from you guys? > > The latest " crisis " which got me to write is > that I was weeding in my yard recently, and got > a bad case of poison ivy. I scratched it more > than I should have, and managed to get a nasty > infection. My arms were swelled way up and oozing > all kinds of nasty stuff. I went to my doctor's > office and they sent me straight to the ER, where > I was given antibiotics, and also a shot of Prednisone > and an RX for oral Prednisone, 3 days of 60 mg > followed by 3 days of 40 mg, followed by 3 days of > 20 mg. My arms healed up nicely, and my P and joint > pains vanished while on Prednisone. I also was free > of the chronic FATIGUE I forgot to mention earlier. > > However, a day or two after my last dose of Prednisone, > I started breaking out in red P spots all over my body. > My chest and face are the hardest hit, but I am literally > covered with red spots. Now I'm wondering if my P is > going to be permanently much worse, or if there is anything > I can do to get back to normal. Any advice would be much > appreciated. > > Thanks and best wishes to all, > > -Bob > > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member > aka(raharris@...). > > In August 2001 list member Jack aka(Cornishpro@...) began > to conduct extensive research which he publishes as the Psoriatic > Arthritic Research Newsletter monthly in our emails and digest format. > Many thanks to Jack. Back issues of the newsletter are stored on our PA > webpage. > > Also remember that the list archives comprise a tremendous amount of > information (Over two years of messages and answers).Feel free to browse > them at your convenience. > > Let's hear from some of you lurkers out there! If you have a comment or > question chances are there is a person who has been around a while who > can help you out with an educated guess for an answer. If not we can at > least steer you in the right direction with a good website to go to for > the answers. > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > and many others who help moderate (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Just a quick update. What I thought was a major P flare-up the doctor said was actually an allergic reaction to the antibiotic (cephalexin) that I was taking. Benadryl seems to be bringing it under control. How ironic to be thrilled to have an allergic reaction, but I am very relieved... > Hi group, > > I have been lurking for a few months now, and > thought it was about time to introduce myself. > > I am a 43 year old male. My P started at > about age 24, and has gradually increased > to more areas, now including scalp, ears, > and groin. I also have characteristic > nail problems (onycholysis). A couple of > years ago, my jaw started acting up in > terms of both pain and restricted range of > motion. After visiting a dentist and an > internist, an oral surgeon refered me to > a rheumatologist, who diagnosed PA on the > basis of x-rays showing sacroiliitis. > I also have pain/swelling in my right 5th > finger DIP joint, and 4th and 5th left toes, > plus some neck pain and mild rib cage pain. > > My rheumy started me on Naprosyn, but I > couldn't tolerate the stomach pain, so we > switched me to 200 mg Celebrex. That plus > a bite splint for my jaw have been reasonably > helpful over the past few months. > > One thing in particular has surprised me. My > Rheumy claims that my jaw and finger problems > are actually osteoarthritis, not the PA, based > on a lack of erosion in the x-rays. This seems > weird to me -- any thoughts from you guys? > > The latest " crisis " which got me to write is > that I was weeding in my yard recently, and got > a bad case of poison ivy. I scratched it more > than I should have, and managed to get a nasty > infection. My arms were swelled way up and oozing > all kinds of nasty stuff. I went to my doctor's > office and they sent me straight to the ER, where > I was given antibiotics, and also a shot of Prednisone > and an RX for oral Prednisone, 3 days of 60 mg > followed by 3 days of 40 mg, followed by 3 days of > 20 mg. My arms healed up nicely, and my P and joint > pains vanished while on Prednisone. I also was free > of the chronic FATIGUE I forgot to mention earlier. > > However, a day or two after my last dose of Prednisone, > I started breaking out in red P spots all over my body. > My chest and face are the hardest hit, but I am literally > covered with red spots. Now I'm wondering if my P is > going to be permanently much worse, or if there is anything > I can do to get back to normal. Any advice would be much > appreciated. > > Thanks and best wishes to all, > > -Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Welcome, Jim. I'm glad you found us, though sorry to learn of your pains. We are a pretty big group! We do have a number of Canadian members, so hopefully someone can steer you toward a qualified flatback specialist. Regarding the work issue, you may be able to get back into it more quickly than you think after revision surgery, especially if your employer is flexible. Techniques and expectations of major spine surgery are vastly different from what they were in the 60's and 70's. This is not to trivialize the impact of major spine surgery, but they do get you up and walking right away. Best of luck in your search for relief, and I hope we can be a good resource and support for you. Sharon new member intro Hi, All My name is Jim Lane. I'm 53 years old and live in Toronto. I had my Harrington in 1966 also here in Toronto. I was more or less OK until 1994 when I had a sudden atack of acute back pain. These acute episodes has continued every couple of years or so. Other than that I have chronic pain that's been getting worse very, very slowly over the years. From the descriptions I've read on the web I think I have flat back syndrome but not an especially bad case of it. I walk around a bit like Groucho Marx, hunched forward a bit. I also have chronic pain in my hips and knees which I've been dealing with on the theory that it's osteoarthritis, Devil's Claw seems to work better that Vioxx. Otherwise it's painkillers for the back pain. I've had consults with 2 local orthopaedists, one in 1995 and again in 2000. Apparently my rod is broken but neither of these guys seemed to think that was much of a problem. Their advice basically was " put up with it for as long as you possibly can " but without much on what, if anything, could or chould be done when I can't take it amy longer. I'm not at all eager to contemplate surgery because I'm afraid that after a lengthy recovery time I may never work again (computer jobs are getting harder to come by these days). Anyway, that's about all I've got to say for myself to start with. I'm looking forward to finding a peer group here because it's kind of lonely not knowing anybody else in the same fix I'm in. Regards, Jim Lane Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Welcome fellow Canadian Jim, Even though I live on the West Coast, I know that there is a Scoliosis Association chapter in Ontario. n, the chapter president, had surgery with Dr. Ford and was very pleased with her treatment. You can either go to www.scoliosis-assoc.org for her information or you can e-mail me personally and I can send you the information. Chronic pain is definitely no fun and waiting to get some sort of treatment is just about as much pain. I'm on the wait list for Vancouver Spine Clinic and things are getting worse. I had my surgery in Toronto in 1973, but I lived in Saskatchewan at the time. Keep tuned to this group as I have learned a lot since I joined and have made some good friends, who understand what we are going through and not just empathies. Llweyn new member intro Hi, All My name is Jim Lane. I'm 53 years old and live in Toronto. I had my Harrington in 1966 also here in Toronto. I was more or less OK until 1994 when I had a sudden atack of acute back pain. These acute episodes has continued every couple of years or so. Other than that I have chronic pain that's been getting worse very, very slowly over the years. From the descriptions I've read on the web I think I have flat back syndrome but not an especially bad case of it. I walk around a bit like Groucho Marx, hunched forward a bit. I also have chronic pain in my hips and knees which I've been dealing with on the theory that it's osteoarthritis, Devil's Claw seems to work better that Vioxx. Otherwise it's painkillers for the back pain. I've had consults with 2 local orthopaedists, one in 1995 and again in 2000. Apparently my rod is broken but neither of these guys seemed to think that was much of a problem. Their advice basically was " put up with it for as long as you possibly can " but without much on what, if anything, could or chould be done when I can't take it amy longer. I'm not at all eager to contemplate surgery because I'm afraid that after a lengthy recovery time I may never work again (computer jobs are getting harder to come by these days). Anyway, that's about all I've got to say for myself to start with. I'm looking forward to finding a peer group here because it's kind of lonely not knowing anybody else in the same fix I'm in. Regards, Jim Lane Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Hi Jim My name is Simone and I live in Spain (born UK, operated on UK), I am 27, operation at 11. I too had a harrington rod in March 1989, like yourself I was well and felt good, carried on with life like nothing had happened. I have always been an active person, until now! I too started with lower back pains from the area where they removed bone graft and this has got worse and worse over the years, the area around the scar is very painful to touch, I had day release for local anaesthetic and steroids in 1998 and that seemed to work for 6 months and then the pains started again. I do sometimes find that when I get up off the sofa I too am bent over until after a few seconds and then I manage to straighten, pain is a very difficult thing to describe and I find it even harder to explain it to a Doctor. My GP in the UK said that the pain I have down my right leg is my sciatic nerve and offered me the chance to have it numbed so I would never feel the pain again, however there are some bad side effects (loosing the feeling in the bottom!), so as you can imagine I said no to that procedure, or I could have the Steroid and anaesthetic injections on a regular basis, but again not a pleasant experience as this causes high weight gain which I then find difficult to shed because I am not able to do much exercise because of the pain. I have Reflexology for the time being while I am searching for a way to make life easier, I do appreciate a cure may not be found but a more comfortable wouldnt go a miss! Maybe Reflexology can help for you too? I am sorry I do not have other options or help but I wanted you to know that you are not alone, if you can swim on a regular basis this may also help, I find I am painless in the water, being weightless I guess is the reason for this, and swimming is of course a very good way to keep fit and keep the muscles going. I have other pains at the top where my rod is now poking out at the top but I do believe you can have this trimmed down but that is for another time. I do wish you well and hope you can find a solution, I will be interested to hear anything you manage to research. Take Care and Best Wishes Simone new member intro Hi, All My name is Jim Lane. I'm 53 years old and live in Toronto. I had my Harrington in 1966 also here in Toronto. I was more or less OK until 1994 when I had a sudden atack of acute back pain. These acute episodes has continued every couple of years or so. Other than that I have chronic pain that's been getting worse very, very slowly over the years. From the descriptions I've read on the web I think I have flat back syndrome but not an especially bad case of it. I walk around a bit like Groucho Marx, hunched forward a bit. I also have chronic pain in my hips and knees which I've been dealing with on the theory that it's osteoarthritis, Devil's Claw seems to work better that Vioxx. Otherwise it's painkillers for the back pain. I've had consults with 2 local orthopaedists, one in 1995 and again in 2000. Apparently my rod is broken but neither of these guys seemed to think that was much of a problem. Their advice basically was " put up with it for as long as you possibly can " but without much on what, if anything, could or chould be done when I can't take it amy longer. I'm not at all eager to contemplate surgery because I'm afraid that after a lengthy recovery time I may never work again (computer jobs are getting harder to come by these days). Anyway, that's about all I've got to say for myself to start with. I'm looking forward to finding a peer group here because it's kind of lonely not knowing anybody else in the same fix I'm in. Regards, Jim Lane Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 --WELCOME Jim, I to am a canadian, right inbetween you and Llywen, Winnipeg. So sorry to hear that you are in chronic pain all the time. I had my surgery in 1976 here in winnipeg. Now I to have a broken rod. We do not know how long it has been that way, at least 4 years. But know it is causing me pain and numbness. I am waiting to get into a spine specialist here in wpg. This group has been great for me and just a wealth of information. I know that they can be that for you also. Debbie - In , " jimlane66 " <jimlane@s...> wrote: > Hi, All > > My name is Jim Lane. I'm 53 years old and live in Toronto. I had my > Harrington in 1966 also here in Toronto. I was more or less OK until > 1994 when I had a sudden atack of acute back pain. These acute > episodes has continued every couple of years or so. Other than that I > have chronic pain that's been getting worse very, very slowly over the > years. > From the descriptions I've read on the web I think I have flat back > syndrome but not an especially bad case of it. I walk around a bit > like Groucho Marx, hunched forward a bit. I also have chronic pain in > my hips and knees which I've been dealing with on the theory that it's > osteoarthritis, Devil's Claw seems to work better that Vioxx. > Otherwise it's painkillers for the back pain. > I've had consults with 2 local orthopaedists, one in 1995 and again in > 2000. Apparently my rod is broken but neither of these guys seemed to > think that was much of a problem. Their advice basically was " put up > with it for as long as you possibly can " but without much on what, if > anything, could or chould be done when I can't take it amy longer. I'm > not at all eager to contemplate surgery because I'm afraid that after > a lengthy recovery time I may never work again (computer jobs are > getting harder to come by these days). > Anyway, that's about all I've got to say for myself to start with. I'm > looking forward to finding a peer group here because it's kind of > lonely not knowing anybody else in the same fix I'm in. > > Regards, > Jim Lane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Hi, Sharon I used to have a flexible employer until they laid me off last year. Since then I've been bumping around with temporary and contract jobs. The computer business isn't the bed of roses it used to be. I'm still hoping to be able to retire in a few years. My back problems aren't as bad as some I've been reading about here or maybe it's just that I've gotten used to it over the years. " Insidious onset " will do that to you. I've made my peace with the fact that there are a lot of things I can't do so maybe a restricted routine has helped. I'm hoping to get more information about the revision surgery options from this group so that I'll be in a better position to evaluate my options if it ever gets to that point. Regards, Jim Lane > Welcome, Jim. > > I'm glad you found us, though sorry to learn of your pains. We are a pretty big group! > > We do have a number of Canadian members, so hopefully someone can steer you toward a qualified flatback specialist. > > Regarding the work issue, you may be able to get back into it more quickly than you think after revision surgery, especially if your employer is flexible. Techniques and expectations of major spine surgery are vastly different from what they were in the 60's and 70's. This is not to trivialize the impact of major spine surgery, but they do get you up and walking right away. > > Best of luck in your search for relief, and I hope we can be a good resource and support for you. > > Sharon > > > new member intro > > > Hi, All > > My name is Jim Lane. I'm 53 years old and live in Toronto. I had my > Harrington in 1966 also here in Toronto. I was more or less OK until > 1994 when I had a sudden atack of acute back pain. These acute > episodes has continued every couple of years or so. Other than that I > have chronic pain that's been getting worse very, very slowly over the > years. > From the descriptions I've read on the web I think I have flat back > syndrome but not an especially bad case of it. I walk around a bit > like Groucho Marx, hunched forward a bit. I also have chronic pain in > my hips and knees which I've been dealing with on the theory that it's > osteoarthritis, Devil's Claw seems to work better that Vioxx. > Otherwise it's painkillers for the back pain. > I've had consults with 2 local orthopaedists, one in 1995 and again in > 2000. Apparently my rod is broken but neither of these guys seemed to > think that was much of a problem. Their advice basically was " put up > with it for as long as you possibly can " but without much on what, if > anything, could or chould be done when I can't take it amy longer. I'm > not at all eager to contemplate surgery because I'm afraid that after > a lengthy recovery time I may never work again (computer jobs are > getting harder to come by these days). > Anyway, that's about all I've got to say for myself to start with. I'm > looking forward to finding a peer group here because it's kind of > lonely not knowing anybody else in the same fix I'm in. > > Regards, > Jim Lane > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Dear Cath, Welcome to the group! I too am 45, had my Harrington Rod surgery in 1973 at UCSF in San Francisco, Ca. I know what you mean about getting records from hospitals from all those years ago. I had Zero luck! My parents who were my parents at the time of my surgery couldn't remember the degrees of my curves, and I don't think I was ever told. We couldn't even remember the name of the surgeon who did the surgery, only our ortho doc who refered us to him, and of course he was dead. I now keep binders with all my medical stuff, surgical reports, insurance, etc. I also get copies of X-rays when possible. I now know that it's my job to keep all that stuff together, and since we've moved a lot, and have seen a lot of doctors it's important to keep that stuff in one place. You learn as you go! I hope that you find a great doctor to help you through your Flatback journey! Colorado Springs New member intro Hello, My name is Cath and I am 45 years old. I had a spinal fusion at the Rolyal National Orthopaedic Hospital, Stanmore, London in 1971 when I was 12. I have congenital scoliosis in my neck and lumbar regions. I had halo pelvic traction and have a Harrington rod for the lumbar fusion.I was in hospital for a ,long time and it was very traumatic. I find it really hard to go back to hospital now. My fusion was successful and I went on to lead a relatively normal life for about 20 years but then things started to deteriorate and over the last 10 years I have gone from being able to get about and being fairly active to needing one stick, then 2 then a wheelchair. I have a lot of pain and my body is so tired. I have seen many doctors and have been told I have Flatback Syndrome. I run my own company and used to work out and about but now I run my business from home as I just can't physically manage.I have an unbelieveably supportive husband & son and Access to Work has made it possible for me to carry on working full time from home - I have a lap top and stair lifts (I live in a 3 story house!)and the computers in the house have been networked so that I can work from the office, a chair or bed - whichever is needed at a particular time. I know you all know that there are so many issues related to this subject - it's not only physical but emotional. It's all fairly new to me and I have spent some time trying to find others who know what I am feeling so I'm so glad to find this group.I don't feel informed about my condition because no one explained to me what was happening to me when I was young - my parents are loving and caring but couldn't cope with discussing it so it's only as I have got older and things have started to go wrong that I have been trying to piece together my medical history and related problems. I only recently discovered I have one kidney, which I believe is common in congenital scoliosis. I also have a thyroid problem and various other issues that I am starting to realise are all conected. I feel so ignorant and there aren't many people I can ask. The hospital couldn't find my records as they have been archived and they said they couldn't get them. My GP notes are very basic. I have no idea what my degre of curvature was or details of my operation - I am amazed at the depth of knowledge other people seem to have about their condition. Well, that's the tip of my iceberg! Look forward to chatting and 'meeting' you all. Bye for now, Cath Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Hi Cath and welcome to the group. I am 49 and had 35 'good' years after my scoliosis fusion with Harrington Rod. Mine was T6 to L3 and now I have a slipping spine at L5-S1 and having another fusion for that in November. My original medical records were gone but the surgeons I saw for opinions this year measured my current curvature and sagittal imbalance from the x-rays taken. I also had a CT scan and MRI. None of them seemed concerned that I did not have the information from 1969. Anyway, I hope you have found a caring doctor to work with you. There are a lot of websites you can get information from like spineuniverse.com. And the folks in this group are wonderful and knowledgeable so you've come to the right place. - Kathi in NJ --- cathw59 <cathw59@...> wrote: >I have seen many doctors and have > been told I have Flatback Syndrome. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.