Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 That's totally not normal. Sharp chest pain that radiates down your arm is a symptom of a heart attack. I don't mean to scare you, but you really should call your doctor's office right now and tell them what happened. Let us know what you find out. Need Advice Please! Hi all, I am on my 2nd day (of my 2nd attempt) of finishing a challenge! I got to day 44 back in October and November but had to go out of town and just lost it....I started Monday with renewed ambition and excitment knowing that I can succeed this time. This morning I was doing my Cardio (alternating between stairstepper and exercycle) and must have gotten my heart rate up too high or somthing. I experienced sudden and sharp chest pain that went down my arm almost immediatly. The weird thing is that it was my right arm, not left. I slowed down then just paced in place until my heart rate stabelized. Has anyone ever experienced this before? I have exercised on an off all of my life and have not had this problem. I just turned 40 in December and am not very overweight (5'9 1/2 " and 146 lbs)so that doesn't seem like it would cause such a strain. By the way, I also have execellent blood pressure every time I have my yearly check up. I guess I just need a little reassurance that this is normal when starting the HIIT. Any advise would be greatly appreciated. Thanks, Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 hi annette, i agree with you. i think she should be casted further if the iv anesthetic has worked. the only question that i have is regarding the syrinx. are they thinking about surgery down the road to alleviate the syrinx? is attributing to cause her scoliosis? i can't imagine that she would improve with asyrinx. i'm sorry if you have written about this before, but i don't remember. as for proof to support your cause, perhaps you could bring in the mehta paper? my best, deshea ---- Original message ---- >Date: Tue, 07 Aug 2007 15:12:39 -0000 > >Subject: Need advice please! >To: infantile_scoliosis > > Hi to everyone. My daughter is 3 years and 1 month > and has been in > casts for 17 months. she is currently in her 7th > cast. She has 5 > small pockets of syrinx in her spinal cord between > c5 and t2, and > started casting at between 62 - 65 deg cobb when she > was 20 months > old. She must be around 40+ degrees now, they didn't > x-ray last > time. her ortho wants to put her in a brace at her > next change. he > said she's getting too big for casts and she has > also had two > reactions with gas anaesthetic. We used IV > completely this time and > she was fine. He's concerned that she has had 13 > anaesthetics and > is due more for further hand surgery. I guess I'm > not convinced > about taking her out of casts. I also have two boys > 6 and four. > My four year old is high functioning autistic and he > will remove the > brace if she asks! At least with the cast it can not > be removed. > > We are in the UK and things seem to be a little > different here but > still the same fight with the doctors. We've got a > meeting on the > 16th August with the ortho to discuss any concerns > as we got the > patient liason service involved. I'm hoping some of > you might have > some words of wisdom! I thought I'd got this casting > lark sussed > but our ortho has gone from telling us at our last > visit that she > needs to be in casts alot longer to wanting to brace > her without any > further evidence, is it just me or does this sound > mad? > > Thanks for letting me waffle on. Thanks in advance > for any advice. > > Annette > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. and ruby (almost 3 yrs old and a handful!) north of boston, ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 hi annette, i agree with you. i think she should be casted further if the iv anesthetic has worked. the only question that i have is regarding the syrinx. are they thinking about surgery down the road to alleviate the syrinx? is attributing to cause her scoliosis? i can't imagine that she would improve with asyrinx. i'm sorry if you have written about this before, but i don't remember. as for proof to support your cause, perhaps you could bring in the mehta paper? my best, deshea ---- Original message ---- >Date: Tue, 07 Aug 2007 15:12:39 -0000 > >Subject: Need advice please! >To: infantile_scoliosis > > Hi to everyone. My daughter is 3 years and 1 month > and has been in > casts for 17 months. she is currently in her 7th > cast. She has 5 > small pockets of syrinx in her spinal cord between > c5 and t2, and > started casting at between 62 - 65 deg cobb when she > was 20 months > old. She must be around 40+ degrees now, they didn't > x-ray last > time. her ortho wants to put her in a brace at her > next change. he > said she's getting too big for casts and she has > also had two > reactions with gas anaesthetic. We used IV > completely this time and > she was fine. He's concerned that she has had 13 > anaesthetics and > is due more for further hand surgery. I guess I'm > not convinced > about taking her out of casts. I also have two boys > 6 and four. > My four year old is high functioning autistic and he > will remove the > brace if she asks! At least with the cast it can not > be removed. > > We are in the UK and things seem to be a little > different here but > still the same fight with the doctors. We've got a > meeting on the > 16th August with the ortho to discuss any concerns > as we got the > patient liason service involved. I'm hoping some of > you might have > some words of wisdom! I thought I'd got this casting > lark sussed > but our ortho has gone from telling us at our last > visit that she > needs to be in casts alot longer to wanting to brace > her without any > further evidence, is it just me or does this sound > mad? > > Thanks for letting me waffle on. Thanks in advance > for any advice. > > Annette > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. and ruby (almost 3 yrs old and a handful!) north of boston, ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Hello: I will comment on the anesthetics. It was a big concern for me having my daughter put under so often and so many times, until one day the resident that day told me that is it is safe--when people suffer bad burns--be it children or adults--they are put under daily to have their wounds cleaned and their bandages changed and in the end-- some of them having been put under daily for months, are just fine. It was an explanation that made sense to me and until now I forgot to share it. I hope this helps answer part of your question. ________________________________ From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of annette1786 Sent: Tuesday, August 07, 2007 10:13 AM To: infantile_scoliosis Subject: Need advice please! Hi to everyone. My daughter is 3 years and 1 month and has been in casts for 17 months. she is currently in her 7th cast. She has 5 small pockets of syrinx in her spinal cord between c5 and t2, and started casting at between 62 - 65 deg cobb when she was 20 months old. She must be around 40+ degrees now, they didn't x-ray last time. her ortho wants to put her in a brace at her next change. he said she's getting too big for casts and she has also had two reactions with gas anaesthetic. We used IV completely this time and she was fine. He's concerned that she has had 13 anaesthetics and is due more for further hand surgery. I guess I'm not convinced about taking her out of casts. I also have two boys 6 and four. My four year old is high functioning autistic and he will remove the brace if she asks! At least with the cast it can not be removed. We are in the UK and things seem to be a little different here but still the same fight with the doctors. We've got a meeting on the 16th August with the ortho to discuss any concerns as we got the patient liason service involved. I'm hoping some of you might have some words of wisdom! I thought I'd got this casting lark sussed but our ortho has gone from telling us at our last visit that she needs to be in casts alot longer to wanting to brace her without any further evidence, is it just me or does this sound mad? Thanks for letting me waffle on. Thanks in advance for any advice. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Hello: I will comment on the anesthetics. It was a big concern for me having my daughter put under so often and so many times, until one day the resident that day told me that is it is safe--when people suffer bad burns--be it children or adults--they are put under daily to have their wounds cleaned and their bandages changed and in the end-- some of them having been put under daily for months, are just fine. It was an explanation that made sense to me and until now I forgot to share it. I hope this helps answer part of your question. ________________________________ From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of annette1786 Sent: Tuesday, August 07, 2007 10:13 AM To: infantile_scoliosis Subject: Need advice please! Hi to everyone. My daughter is 3 years and 1 month and has been in casts for 17 months. she is currently in her 7th cast. She has 5 small pockets of syrinx in her spinal cord between c5 and t2, and started casting at between 62 - 65 deg cobb when she was 20 months old. She must be around 40+ degrees now, they didn't x-ray last time. her ortho wants to put her in a brace at her next change. he said she's getting too big for casts and she has also had two reactions with gas anaesthetic. We used IV completely this time and she was fine. He's concerned that she has had 13 anaesthetics and is due more for further hand surgery. I guess I'm not convinced about taking her out of casts. I also have two boys 6 and four. My four year old is high functioning autistic and he will remove the brace if she asks! At least with the cast it can not be removed. We are in the UK and things seem to be a little different here but still the same fight with the doctors. We've got a meeting on the 16th August with the ortho to discuss any concerns as we got the patient liason service involved. I'm hoping some of you might have some words of wisdom! I thought I'd got this casting lark sussed but our ortho has gone from telling us at our last visit that she needs to be in casts alot longer to wanting to brace her without any further evidence, is it just me or does this sound mad? Thanks for letting me waffle on. Thanks in advance for any advice. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 >Thanks Deshsea, the Neurosurgeon says the syrinx has nothing to do with the scoliosis and the ortho says it could be the cause? They aren't planning on any surgery at the moment for the syrinx unless she requires surgery for the scoliosis. Ihave pirinted out the mehta file to take. the last time I mentioned it the ortho said he'd heard about it but to be careful how much I read! I think that was for his benefit, not mine. I will let you all know how I get on. Annette > hi annette, > > i agree with you. i think she should be casted further if the iv anesthetic has worked. the only question that i have is regarding the syrinx. are they thinking about surgery down the road to alleviate the syrinx? is attributing to cause her scoliosis? i can't imagine that she would improve with asyrinx. i'm sorry if you have written about this before, but i don't remember. > > as for proof to support your cause, perhaps you could bring in the mehta paper? > > my best, > deshea > > ---- Original message ---- > >Date: Tue, 07 Aug 2007 15:12:39 -0000 > > > >Subject: Need advice please! > >To: infantile_scoliosis > > > > Hi to everyone. My daughter is 3 years and 1 month > > and has been in > > casts for 17 months. she is currently in her 7th > > cast. She has 5 > > small pockets of syrinx in her spinal cord between > > c5 and t2, and > > started casting at between 62 - 65 deg cobb when she > > was 20 months > > old. She must be around 40+ degrees now, they didn't > > x-ray last > > time. her ortho wants to put her in a brace at her > > next change. he > > said she's getting too big for casts and she has > > also had two > > reactions with gas anaesthetic. We used IV > > completely this time and > > she was fine. He's concerned that she has had 13 > > anaesthetics and > > is due more for further hand surgery. I guess I'm > > not convinced > > about taking her out of casts. I also have two boys > > 6 and four. > > My four year old is high functioning autistic and he > > will remove the > > brace if she asks! At least with the cast it can not > > be removed. > > > > We are in the UK and things seem to be a little > > different here but > > still the same fight with the doctors. We've got a > > meeting on the > > 16th August with the ortho to discuss any concerns > > as we got the > > patient liason service involved. I'm hoping some of > > you might have > > some words of wisdom! I thought I'd got this casting > > lark sussed > > but our ortho has gone from telling us at our last > > visit that she > > needs to be in casts alot longer to wanting to brace > > her without any > > further evidence, is it just me or does this sound > > mad? > > > > Thanks for letting me waffle on. Thanks in advance > > for any advice. > > > > Annette > > > > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. > and ruby (almost 3 yrs old and a handful!) > north of boston, ma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 >Thanks Deshsea, the Neurosurgeon says the syrinx has nothing to do with the scoliosis and the ortho says it could be the cause? They aren't planning on any surgery at the moment for the syrinx unless she requires surgery for the scoliosis. Ihave pirinted out the mehta file to take. the last time I mentioned it the ortho said he'd heard about it but to be careful how much I read! I think that was for his benefit, not mine. I will let you all know how I get on. Annette > hi annette, > > i agree with you. i think she should be casted further if the iv anesthetic has worked. the only question that i have is regarding the syrinx. are they thinking about surgery down the road to alleviate the syrinx? is attributing to cause her scoliosis? i can't imagine that she would improve with asyrinx. i'm sorry if you have written about this before, but i don't remember. > > as for proof to support your cause, perhaps you could bring in the mehta paper? > > my best, > deshea > > ---- Original message ---- > >Date: Tue, 07 Aug 2007 15:12:39 -0000 > > > >Subject: Need advice please! > >To: infantile_scoliosis > > > > Hi to everyone. My daughter is 3 years and 1 month > > and has been in > > casts for 17 months. she is currently in her 7th > > cast. She has 5 > > small pockets of syrinx in her spinal cord between > > c5 and t2, and > > started casting at between 62 - 65 deg cobb when she > > was 20 months > > old. She must be around 40+ degrees now, they didn't > > x-ray last > > time. her ortho wants to put her in a brace at her > > next change. he > > said she's getting too big for casts and she has > > also had two > > reactions with gas anaesthetic. We used IV > > completely this time and > > she was fine. He's concerned that she has had 13 > > anaesthetics and > > is due more for further hand surgery. I guess I'm > > not convinced > > about taking her out of casts. I also have two boys > > 6 and four. > > My four year old is high functioning autistic and he > > will remove the > > brace if she asks! At least with the cast it can not > > be removed. > > > > We are in the UK and things seem to be a little > > different here but > > still the same fight with the doctors. We've got a > > meeting on the > > 16th August with the ortho to discuss any concerns > > as we got the > > patient liason service involved. I'm hoping some of > > you might have > > some words of wisdom! I thought I'd got this casting > > lark sussed > > but our ortho has gone from telling us at our last > > visit that she > > needs to be in casts alot longer to wanting to brace > > her without any > > further evidence, is it just me or does this sound > > mad? > > > > Thanks for letting me waffle on. Thanks in advance > > for any advice. > > > > Annette > > > > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. > and ruby (almost 3 yrs old and a handful!) > north of boston, ma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 hi anne, how confusing for your ortho to say one thing and the neuro to say something else. doing a quick google search on syrinx and scoliosis, i found these: http://www.wheelessonline.com/ortho/syringomyelia or another site from a neuro perspective: http://cpmcnet.columbia.edu/dept/nsg/PNS/Syringohydromyelia.html or interesting paper: http://www.spinejournal.com/pt/re/spine/abstract.00007632-200304150-00014.htm;js\ essionid=G4ZBxj7HNTC1sWnJp1ky8CRCV76CB2QXnm4qhXGH5kdvthylmQkd!2112021004!1811956\ 29!8091!-1 may need to be cut and pasted to find properly. i would side with the ortho. has he recommended going to another neuro? is it possible to get 2nd opinions in the uk? again, good luck! deshea ---- Original message ---- >Date: Tue, 07 Aug 2007 19:59:56 -0000 > >Subject: Re: Need advice please! >To: infantile_scoliosis > > > >Thanks Deshsea, the Neurosurgeon says the syrinx > has nothing to do > with the scoliosis and the ortho says it could be > the cause? They > aren't planning on any surgery at the moment for the > syrinx unless > she requires surgery for the scoliosis. Ihave > pirinted out the > mehta file to take. the last time I mentioned it the > ortho said > he'd heard about it but to be careful how much I > read! I think that > was for his benefit, not mine. I will let you all > know how I get on. > > Annette > > > hi annette, > > > > i agree with you. i think she should be casted > further if the iv > anesthetic has worked. the only question that i have > is regarding > the syrinx. are they thinking about surgery down the > road to > alleviate the syrinx? is attributing to cause her > scoliosis? i > can't imagine that she would improve with asyrinx. > i'm sorry if > you have written about this before, but i don't > remember. > > > > as for proof to support your cause, perhaps you > could bring in the > mehta paper? > > > > my best, > > deshea > > > > ---- Original message ---- > > >Date: Tue, 07 Aug 2007 15:12:39 -0000 > > > > > >Subject: Need advice > please! > > >To: infantile_scoliosis > > > > > > Hi to everyone. My daughter is 3 years and 1 > month > > > and has been in > > > casts for 17 months. she is currently in her 7th > > > cast. She has 5 > > > small pockets of syrinx in her spinal cord > between > > > c5 and t2, and > > > started casting at between 62 - 65 deg cobb when > she > > > was 20 months > > > old. She must be around 40+ degrees now, they > didn't > > > x-ray last > > > time. her ortho wants to put her in a brace at > her > > > next change. he > > > said she's getting too big for casts and she has > > > also had two > > > reactions with gas anaesthetic. We used IV > > > completely this time and > > > she was fine. He's concerned that she has had 13 > > > anaesthetics and > > > is due more for further hand surgery. I guess > I'm > > > not convinced > > > about taking her out of casts. I also have two > boys > > > 6 and four. > > > My four year old is high functioning autistic > and he > > > will remove the > > > brace if she asks! At least with the cast it can > not > > > be removed. > > > > > > We are in the UK and things seem to be a little > > > different here but > > > still the same fight with the doctors. We've got > a > > > meeting on the > > > 16th August with the ortho to discuss any > concerns > > > as we got the > > > patient liason service involved. I'm hoping some > of > > > you might have > > > some words of wisdom! I thought I'd got this > casting > > > lark sussed > > > but our ortho has gone from telling us at our > last > > > visit that she > > > needs to be in casts alot longer to wanting to > brace > > > her without any > > > further evidence, is it just me or does this > sound > > > mad? > > > > > > Thanks for letting me waffle on. Thanks in > advance > > > for any advice. > > > > > > Annette > > > > > > > > > > mom to lucas 5 1/2 yrs old with > infantile scoliosis diagnosed at 18 mos 68o/45o; > spinal detethering > due to a tight/fatty filum at 22 mos; tlso and > charleston brace from > 18 mos to 2 1/2 yrs old at children's boston, ma; > serial plaster > casting from 2 1/2 until 4 1/2 at shriners in erie, > pa; now in a > spinecor brace at 18o/6o from montreal. > > and ruby (almost 3 yrs old and a handful!) > > north of boston, ma > > > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. and ruby (almost 3 yrs old and a handful!) north of boston, ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 hi anne, how confusing for your ortho to say one thing and the neuro to say something else. doing a quick google search on syrinx and scoliosis, i found these: http://www.wheelessonline.com/ortho/syringomyelia or another site from a neuro perspective: http://cpmcnet.columbia.edu/dept/nsg/PNS/Syringohydromyelia.html or interesting paper: http://www.spinejournal.com/pt/re/spine/abstract.00007632-200304150-00014.htm;js\ essionid=G4ZBxj7HNTC1sWnJp1ky8CRCV76CB2QXnm4qhXGH5kdvthylmQkd!2112021004!1811956\ 29!8091!-1 may need to be cut and pasted to find properly. i would side with the ortho. has he recommended going to another neuro? is it possible to get 2nd opinions in the uk? again, good luck! deshea ---- Original message ---- >Date: Tue, 07 Aug 2007 19:59:56 -0000 > >Subject: Re: Need advice please! >To: infantile_scoliosis > > > >Thanks Deshsea, the Neurosurgeon says the syrinx > has nothing to do > with the scoliosis and the ortho says it could be > the cause? They > aren't planning on any surgery at the moment for the > syrinx unless > she requires surgery for the scoliosis. Ihave > pirinted out the > mehta file to take. the last time I mentioned it the > ortho said > he'd heard about it but to be careful how much I > read! I think that > was for his benefit, not mine. I will let you all > know how I get on. > > Annette > > > hi annette, > > > > i agree with you. i think she should be casted > further if the iv > anesthetic has worked. the only question that i have > is regarding > the syrinx. are they thinking about surgery down the > road to > alleviate the syrinx? is attributing to cause her > scoliosis? i > can't imagine that she would improve with asyrinx. > i'm sorry if > you have written about this before, but i don't > remember. > > > > as for proof to support your cause, perhaps you > could bring in the > mehta paper? > > > > my best, > > deshea > > > > ---- Original message ---- > > >Date: Tue, 07 Aug 2007 15:12:39 -0000 > > > > > >Subject: Need advice > please! > > >To: infantile_scoliosis > > > > > > Hi to everyone. My daughter is 3 years and 1 > month > > > and has been in > > > casts for 17 months. she is currently in her 7th > > > cast. She has 5 > > > small pockets of syrinx in her spinal cord > between > > > c5 and t2, and > > > started casting at between 62 - 65 deg cobb when > she > > > was 20 months > > > old. She must be around 40+ degrees now, they > didn't > > > x-ray last > > > time. her ortho wants to put her in a brace at > her > > > next change. he > > > said she's getting too big for casts and she has > > > also had two > > > reactions with gas anaesthetic. We used IV > > > completely this time and > > > she was fine. He's concerned that she has had 13 > > > anaesthetics and > > > is due more for further hand surgery. I guess > I'm > > > not convinced > > > about taking her out of casts. I also have two > boys > > > 6 and four. > > > My four year old is high functioning autistic > and he > > > will remove the > > > brace if she asks! At least with the cast it can > not > > > be removed. > > > > > > We are in the UK and things seem to be a little > > > different here but > > > still the same fight with the doctors. We've got > a > > > meeting on the > > > 16th August with the ortho to discuss any > concerns > > > as we got the > > > patient liason service involved. I'm hoping some > of > > > you might have > > > some words of wisdom! I thought I'd got this > casting > > > lark sussed > > > but our ortho has gone from telling us at our > last > > > visit that she > > > needs to be in casts alot longer to wanting to > brace > > > her without any > > > further evidence, is it just me or does this > sound > > > mad? > > > > > > Thanks for letting me waffle on. Thanks in > advance > > > for any advice. > > > > > > Annette > > > > > > > > > > mom to lucas 5 1/2 yrs old with > infantile scoliosis diagnosed at 18 mos 68o/45o; > spinal detethering > due to a tight/fatty filum at 22 mos; tlso and > charleston brace from > 18 mos to 2 1/2 yrs old at children's boston, ma; > serial plaster > casting from 2 1/2 until 4 1/2 at shriners in erie, > pa; now in a > spinecor brace at 18o/6o from montreal. > > and ruby (almost 3 yrs old and a handful!) > > north of boston, ma > > > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. and ruby (almost 3 yrs old and a handful!) north of boston, ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Hi Annette, Welcome to this group. I am glad to see that we are reaching across the world! I have been out of the loop a little bit. My daughter just went for VEPTR treatment. I saw your post though and wanted to reply. If your daughter has a syrinx I would definitely get the details on it. Syrinx are often considered a neurological cause of scoliosis. Where exactly is her curve(s)? She has 5 pockets of syrinx. Can the ortho tell you how they affect her spine? Maybe that is the reason for the slow correction. Does she have any other factors such an bony anomalies? Usually one properly applied cast can correct 20 degrees. What technique is your ortho using? Be prepared to have doctors not like the fact that your are informing yourself on scoliosis. Just be as courteous as possible but keep pushing for answers. It is perfectly logical that you would want to make informed decisions regarding your child's treatment options. Sorry for all the questions. You are doing a great job getting her treatment and keeping up with the medical professionals. They need to understand that you will be a part of the treatment team, and not just sit back and take them at their word. Shellie Grant annette1786 wrote: >Thanks Deshsea, the Neurosurgeon says the syrinx has nothing to do with the scoliosis and the ortho says it could be the cause? They aren't planning on any surgery at the moment for the syrinx unless she requires surgery for the scoliosis. Ihave pirinted out the mehta file to take. the last time I mentioned it the ortho said he'd heard about it but to be careful how much I read! I think that was for his benefit, not mine. I will let you all know how I get on. Annette > hi annette, > > i agree with you. i think she should be casted further if the iv anesthetic has worked. the only question that i have is regarding the syrinx. are they thinking about surgery down the road to alleviate the syrinx? is attributing to cause her scoliosis? i can't imagine that she would improve with asyrinx. i'm sorry if you have written about this before, but i don't remember. > > as for proof to support your cause, perhaps you could bring in the mehta paper? > > my best, > deshea > > ---- Original message ---- > >Date: Tue, 07 Aug 2007 15:12:39 -0000 > > > >Subject: Need advice please! > >To: infantile_scoliosis > > > > Hi to everyone. My daughter is 3 years and 1 month > > and has been in > > casts for 17 months. she is currently in her 7th > > cast. She has 5 > > small pockets of syrinx in her spinal cord between > > c5 and t2, and > > started casting at between 62 - 65 deg cobb when she > > was 20 months > > old. She must be around 40+ degrees now, they didn't > > x-ray last > > time. her ortho wants to put her in a brace at her > > next change. he > > said she's getting too big for casts and she has > > also had two > > reactions with gas anaesthetic. We used IV > > completely this time and > > she was fine. He's concerned that she has had 13 > > anaesthetics and > > is due more for further hand surgery. I guess I'm > > not convinced > > about taking her out of casts. I also have two boys > > 6 and four. > > My four year old is high functioning autistic and he > > will remove the > > brace if she asks! At least with the cast it can not > > be removed. > > > > We are in the UK and things seem to be a little > > different here but > > still the same fight with the doctors. We've got a > > meeting on the > > 16th August with the ortho to discuss any concerns > > as we got the > > patient liason service involved. I'm hoping some of > > you might have > > some words of wisdom! I thought I'd got this casting > > lark sussed > > but our ortho has gone from telling us at our last > > visit that she > > needs to be in casts alot longer to wanting to brace > > her without any > > further evidence, is it just me or does this sound > > mad? > > > > Thanks for letting me waffle on. Thanks in advance > > for any advice. > > > > Annette > > > > > mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a spinecor brace at 18o/6o from montreal. > and ruby (almost 3 yrs old and a handful!) > north of boston, ma > --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 > > Hi, I will try to keep this short as possible. I have been on this > diet for the last six months, although not completely. Honestly, I > have wavered back and forth with it but trying to keep going back to it. >I have been taking grapefruit seed extract for the last 2 months and a combination of liver herbs as it helps with my energy. I just read > these herbs should not be taken for more than 2 weeks though and it > has been 2 months so I just stopped taking them. ==>I believe raw garlic or oil of oregano or clove oil are much better to take than grapefruit seed extract. You can take them for years without any problems, and the same for liver herbs. > Lately, I have had small episodes of nausea come and go with some > light ovary/bladder cramping (I have a history of UTI). I also > introduced probiotics about a week ago. Coconut oil is 1-2 tbsp a day. ==>It is important that you take 5-6 tbls. of coconut oil daily, and when you can tolerate its antifungal effects, which causes die-off you add one (1) other antifungal (other than coconut oil) as listed in my main candida article. When your die-off symptoms are tolerable after adding 1 antifungal to your program, you would add probiotics. ==>Since you have a history of UTI your body will retrace them according to Hering's Law of Cures, just like it will any previous illness, symptoms, diseases, injuries, dental & medical surgeries, etc. > Yesterday, I took antifungals, probiotics and a large amount of Vit.C without eating a whole bunch and had some severe nausea in the > afternoon. I also noticed thrush on the back of my tongue. It went > away until evening and had extreme nausea with one bout of vomiting. ==>Probiotics will create healing reactions and they also kill off candida. Nausea is the body's way of getting rid of toxins, usually caused by candida or other bacteria being killed off in the stomach. Some symptoms will increase during natural healing, like thrush. I recommend you stop taking any antifungal other than coconut oil and also stop the probiotics. When you can take 5-6 tbls of coconut oil you can contin ue on the rest of the program. > There also was a trace of blood in my saliva after the vomiting (from thrush???) although I didn't see any blood in my vomit. (sorry for graphics) ==>Thrush doesn't usually bleed nor can it bleed even after vomiting. > I am still very nauseous about 12 hours later even though I have taken nothing since late afternoon except food. I am wondering if this sounds like die off or if I should go to doctor. I am concerned about the blood in my saliva as I don't know if this has anything to do with yeast or not. (there is no blood anymore) Would I still be nauseous so long after taking anything? ==>Reactions can occur for up to 5 days. > Also, still have intermittent light cramping in bladder area. > Sorry for length. Am very unsure if maybe I just have a flu or if I > should get this checked. ==>If you are concerned you should see your doctor. Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 hi! I am new to the group, in a similar situation. My son is 4 1/2 months old, has mild plagiocephaly from tort. We have an appt to the craniofacial team in march 3/11. His head is also small, in the 5th percentile, and his ht and wt is in the 50th. we started physical therapy with him this week, and will be going once a week. i am worried that it will not be enough. they were considering doing a cat scan of his head to make sure the bones are fusing properly, but now want to wait until after 3/11 appt. since he is developing well in all other aspects I think they are not going to do the CT scan, I am confused, and unsure of what to do. push for the helmet? do the ct scan? help! we also have a 3 year old who was born with a bilateral cleft lip and has had 2 surgeries already, so i really want to make sure we are doing the right things, and sooner than later! thank you!! Alyson in connecticut Re: Anyone on here choose not to get a helmet?Plagiocephaly > Hi there-> The majority of us here have chosen to get a band/helmet for our > children, though there are a few that succeeded in avoiding a > band by > doing aggressive repositioning. I did some repo when my baby was > younger (2-4 months old) mostly for tort, but was then told it > would > round out on its own and never advised to try anything more > aggressive. So a year went by but his head was still really > misshapen. > We then got him a band at 17 months old. How old is your son? If > he's > younger than 6 months old or so, you may have success with > aggressive > repositioning. But you have to commit to it, and possibly set a > time > limit for when you'll stop and reevaluate to see if a band is > the > better option. From my experience though, little changes > naturally in > a year's time, so I would not advise just letting it go and > seeing if > it fixes itself. There is an older plagio group you can > join > that have a lot of members who did not band and still regret not > doing > something about their now older children who still have plagio. > OlderPlag/> > Good luck!> > Jake-2 (DOCBand Grad 9/08)> Jordan-5> > > > >> > My son has mild-moderate plagiocephaly, and we're really on > the > fence > > as to what we should do. I'd love to hear from people who > chose not > to > > get a helmet, and what their experience has been.> > > > Thanks!> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 My daughter () is almost 7 months and is right where your son is in the percentiles. She had an x-ray at 2 months to check that the bones had not fused. They had not. I never went through with the physical therepy for her tortitollis. She does still have plagio. She has an appointment on the 25th with a cranio facial plastic surgeon. I know she is going to need a band and I want to get her head shape fixed for her, however I don't know how everything else is going to go. I have always had a fear from her head being in the bottom 5th percentile, because they say it could be because the brain is growing properly. is pretty advanced for her age (I think anyway). She is crawing with her belly off the ground and pulls up and climbs on everything she can. I asked the question before if the small head circumfrence could be from the plagio and could she move higher on the percentile chart when her head is fixed. I had no replys to it. That is something I'm definately asking on the 25th. Good luck! Dawn From: "alybri8173@..." <alybri8173@...>Plagiocephaly Cc: Plagiocephaly Sent: Wednesday, February 11, 2009 7:17:48 AMSubject: need advice please! hi! I am new to the group, in a similar situation. My son is 4 1/2 months old, has mild plagiocephaly from tort. We have an appt to the craniofacial team in march 3/11. His head is also small, in the 5th percentile, and his ht and wt is in the 50th. we started physical therapy with him this week, and will be going once a week. i am worried that it will not be enough. they were considering doing a cat scan of his head to make sure the bones are fusing properly, but now want to wait until after 3/11 appt. since he is developing well in all other aspects I think they are not going to do the CT scan, I am confused, and unsure of what to do. push for the helmet? do the ct scan? help! we also have a 3 year old who was born with a bilateral cleft lip and has had 2 surgeries already, so i really want to make sure we are doing the right things, and sooner than later! thank you!! Alyson in connecticut Re: Anyone on here choose not to get a helmet?Plagiocephaly> Hi there-> The majority of us here have chosen to get a band/helmet for our > children, though there are a few that succeeded in avoiding a > band by > doing aggressive repositioning. I did some repo when my baby was > younger (2-4 months old) mostly for tort, but was then told it > would > round out on its own and never advised to try anything more > aggressive. So a year went by but his head was still really > misshapen. > We then got him a band at 17 months old. How old is your son? If > he's > younger than 6 months old or so, you may have success with > aggressive > repositioning. But you have to commit to it, and possibly set a > time > limit for when you'll stop and reevaluate to see if a band is > the > better option. From my experience though, little changes > naturally in > a year's time, so I would not advise just letting it go and > seeing if > it fixes itself. There is an older plagio group you can > join > that have a lot of members who did not band and still regret not > doing > something about their now older children who still have plagio. > http://health. groups.. com/group/ OlderPlag/> > Good luck!> > Jake-2 (DOCBand Grad 9/08)> Jordan-5> > > > >> > My son has mild-moderate plagiocephaly, and we're really on > the > fence > > as to what we should do. I'd love to hear from people who > chose not > to > > get a helmet, and what their experience has been.> > > > Thanks!> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Thank you Dawn!! I hope your visit on the 25th goes well. Please let me know. Alyson Re: Anyone on here choose not to get a helmet?> Plagiocephaly> > > Hi there-> > The majority of us here have chosen to get a band/helmet for > our > > children, though there are a few that succeeded in avoiding a > > band by > > doing aggressive repositioning. I did some repo when my baby > was > > younger (2-4 months old) mostly for tort, but was then told it > > would > > round out on its own and never advised to try anything more > > aggressive. So a year went by but his head was still really > > misshapen. > > We then got him a band at 17 months old. How old is your son? > If > > he's > > younger than 6 months old or so, you may have success with > > aggressive > > repositioning. But you have to commit to it, and possibly set > a > > time > > limit for when you'll stop and reevaluate to see if a band is > > the > > better option. From my experience though, little changes > > naturally in > > a year's time, so I would not advise just letting it go and > > seeing if > > it fixes itself. There is an older plagio group you can > > join > > that have a lot of members who did not band and still regret > not > > doing > > something about their now older children who still have > plagio. > > http://health. groups.. com/group/ OlderPlag/> > > > Good luck!> > > > Jake-2 (DOCBand Grad 9/08)> > Jordan-5> > > > > > > > >> > > My son has mild-moderate plagiocephaly, and we're really on > > the > > fence > > > as to what we should do. I'd love to hear from people who > > chose not > > to > > > get a helmet, and what their experience has been.> > > > > > Thanks!> > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Normally I would say you have time to decide about banding but if your son's head grows more slowly you might want to band soon to catch as much growth as possible. He's young so even though his head is small he'll be growing. You might want to post pictures of his head hear to get opinions - we're used to looking for plagio. Also for guidelines I would say most docs recommend banding at 10 mm or asymmetry but some as low as 8. I'm guessing you'll get measurements at your appointment on the 11ths (I would ask for them). My duaghter had brachy (flat in back with extra width) and based on her head my doc wasn't concerned about craiosystosis, so we didn't do a CT scan. Many do to rule out cranio, but if you can skip the radiation, why not. So only do it if cranio is a concern - this will have to be based on your doc's opinion. -christine sydney, 3 yrs, starband grad > > > > > > My son has mild-moderate plagiocephaly, and we're really on > > the > > fence > > > as to what we should do. I'd love to hear from people who > > chose not > > to > > > get a helmet, and what their experience has been. > > > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 My daughter's head is also really small. She was 43 cm at her 15-month appointment. That's way off of the charts, but that's where she's always been. We were sent to a neurosurgeon to be sure, but they said that as long as she's been on her own curve, there are no concerns. Like your daughter, her development has been normal. Of course, her overall frame is also on the small side, although she only got down to the 5th when she was having reflux troubles. She tends to be around the 10th to 25th otherwise. They say that as long as the head is growing and development is normal, things are probably okay. We were sent to the specialist because her head had also not rounded out and our ped wanted to be sure. He didn't even do a scan and said she was fine. , mom to , 17 months 3 weeks almost 13 weeks in STARband plus CST Edgewood, MD Re: Anyone on here choose not to get a helmet?Plagiocephaly> Hi there-> The majority of us here have chosen to get a band/helmet for our > children, though there are a few that succeeded in avoiding a > band by > doing aggressive repositioning. I did some repo when my baby was > younger (2-4 months old) mostly for tort, but was then told it > would > round out on its own and never advised to try anything more > aggressive. So a year went by but his head was still really > misshapen. > We then got him a band at 17 months old. How old is your son? If > he's > younger than 6 months old or so, you may have success with > aggressive > repositioning. But you have to commit to it, and possibly set a > time > limit for when you'll stop and reevaluate to see if a band is > the > better option. From my experience though, little changes > naturally in > a year's time, so I would not advise just letting it go and > seeing if > it fixes itself. There is an older plagio group you can > join > that have a lot of members who did not band and still regret not > doing > something about their now older children who still have plagio. > http://health. groups.. com/group/ OlderPlag/> > Good luck!> > Jake-2 (DOCBand Grad 9/08)> Jordan-5> > > > >> > My son has mild-moderate plagiocephaly, and we're really on > the > fence > > as to what we should do. I'd love to hear from people who > chose not > to > > get a helmet, and what their experience has been.> > > > Thanks!> >> > > Quote Link to comment Share on other sites More sharing options...
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