Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi cindy, From what i understand they can do an EP study where they run a catheter up through the groin to the heart and send little shocks to the heart to see how it responds, that tells them if there is a problem with the electrical system or not. I had that same question before my pacemaker, i asked him if i still had some compression of the brain stem could that be causing it. He said it would more than likely cause tacchycardia, but the EP study would show for sure. If you find a cardiologist who also specializes in electrophysiolohgy that would be excellent. What type of Doc? > Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, Does he see a Neurologist or Neurosurgeon? The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I know there are nurs! > es in th > is group, where do I take him? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi cindy, From what i understand they can do an EP study where they run a catheter up through the groin to the heart and send little shocks to the heart to see how it responds, that tells them if there is a problem with the electrical system or not. I had that same question before my pacemaker, i asked him if i still had some compression of the brain stem could that be causing it. He said it would more than likely cause tacchycardia, but the EP study would show for sure. If you find a cardiologist who also specializes in electrophysiolohgy that would be excellent. What type of Doc? > Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, Does he see a Neurologist or Neurosurgeon? The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I know there are nurs! > es in th > is group, where do I take him? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 >>Does he see a Neurologist or Neurosurgeon?<<< OK.. Here is a personal but very informative opinion. First a question.. Would you have a carpenter wire the electrical stuff in your house when putting in a new heater and pump in a pool? If you would, don't ever invite me over to jump in! When you are talking about the spine you NEED TO SEE A NEUROSURGEON. An electrician! When you need shoulder reconstruction you need a orthopedic surgeon. A carpenter! I am sure I can find the post I sent to Lana when she was considering just this. You have to really think about this.. There are others that will have a very different opinion but in all y 20 years working in the medical malpractice field I saw more " oops " coming from orthopedic surgeons working on spins than any other specialty. At least promise me that you will get at least one opinion from a neurosurgeon BEFORE having surgery done by a orthopedic surgeon. OK? Debbi AKA: jetskideb SoCal EDS'er What type of Doc? Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I! know th ere are nurses in this group, where do I take him? Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 >>Does he see a Neurologist or Neurosurgeon?<<< OK.. Here is a personal but very informative opinion. First a question.. Would you have a carpenter wire the electrical stuff in your house when putting in a new heater and pump in a pool? If you would, don't ever invite me over to jump in! When you are talking about the spine you NEED TO SEE A NEUROSURGEON. An electrician! When you need shoulder reconstruction you need a orthopedic surgeon. A carpenter! I am sure I can find the post I sent to Lana when she was considering just this. You have to really think about this.. There are others that will have a very different opinion but in all y 20 years working in the medical malpractice field I saw more " oops " coming from orthopedic surgeons working on spins than any other specialty. At least promise me that you will get at least one opinion from a neurosurgeon BEFORE having surgery done by a orthopedic surgeon. OK? Debbi AKA: jetskideb SoCal EDS'er What type of Doc? Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I! know th ere are nurses in this group, where do I take him? Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Cindy: I am so sorry you are having these difficulties. I think Debbie is right on. Getting the C spine issue assessed by a neurosurgeon seems like the priority, particularly if your PCP will refer you. , do you know any others having had neurosurgery in the Detroit area and who they had experience with. That would be a start. Has anyone suggested that Dylan could wear a soft stockinet collar for neck support til he gets seen. It seems to me a soft neck colar could reduce movement. You can purchase stockinet at a medical drug store, or buy a pair of long cotton socks, long enough to go around the neck and be secured at back side. Fill the stockings with stuffing and tie aroumd the neck. Looks like two layers of sausages, one on top of the other. Softer on the skin than hard collars. Bernie What type of Doc? Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, Does he see a Neurologist or Neurosurgeon? The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I know there are nurses in this group, where do I take him? Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Cindy: I am so sorry you are having these difficulties. I think Debbie is right on. Getting the C spine issue assessed by a neurosurgeon seems like the priority, particularly if your PCP will refer you. , do you know any others having had neurosurgery in the Detroit area and who they had experience with. That would be a start. Has anyone suggested that Dylan could wear a soft stockinet collar for neck support til he gets seen. It seems to me a soft neck colar could reduce movement. You can purchase stockinet at a medical drug store, or buy a pair of long cotton socks, long enough to go around the neck and be secured at back side. Fill the stockings with stuffing and tie aroumd the neck. Looks like two layers of sausages, one on top of the other. Softer on the skin than hard collars. Bernie What type of Doc? Due to the findings at NIH, Dylan needs to see some specialists. For the C7 spine laxity, and bulging disk, and the L shoulder with reduced reflex from the cervical or shoulder joint, plus the broken spinus process at L3 right over the nerve that runs to his R knee pain, Does he see a Neurologist or Neurosurgeon? The primary today was no help. He doesn't understand all this and doesn't want to. So I can ask for what ever Doc and tests I want. I was very upset with him today for his response to the problems found. That's a whole other story. Dylan's EKG today still showed him in Bradycardia still,(Two weeks now that I know of) which no-one is taking seriously. His HR during that 1 minute test was 46. He is not a trained athlete, he is a child that has laid in bed for two years. Drives me crazy! My gut tells me this is a problem. A big problem. We got back late from the Doc's so, Monday I'll call a cardiologist. I can only find one Dr in Michigan that treats autonomic dysfunction but I don't know if he is a heart Dr. I'll find out Monday. I don't want him to have a pacemaker if the Autonomic dysfunction isn't addressed at the same time. From what I have read, the autonomic dysfunction can cause the bradycardia, and then he'd have a pace maker when the heart was never the problem. This is all getting so darned complicated. I'm afraid if I take him to a regular heart Dr, they'd want to put in the pacemaker. We just have to get to Dr Grubbs!. I am changing insurance to better suit Dylan's needs, but it doesn't start till Oct 1. Till then, I'm stuck with who ever is in my book. How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I know there are nurses in this group, where do I take him? Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 From what I understand, nurses know the scoop on the good doctors. So, you may want to ask around at the local hospital. Talk to only the nurses and ask who they would take their family members to if they needed a cardiologist... >>> How in the heck do you pick a name of a Dr. in a book? More things show up every day. Today he has been dizzy. Yesterday his foot zapped him everytime he put weight on it. Sorry this is getting long, but I'm frustrated. He's 17 and the Dang Doc just isn't helpful with these new problems found. He admitted it was over his head. I like that a Doc can admit that but where do I go from here? I have to start Monday. I know there are nurses in this group, where do I take him? <<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 I sent a message to my chiari group asking about anybody who had had postive experiences with one, especially pediatric ones, I'll see what sort of response i get and let you know. What type of Doc? > > Due to the findings at NIH, Dylan needs to see some specialists. For the > C7 spine laxity, and bulging disk, and the L shoulder with reduced > reflex from the cervical or shoulder joint, plus the broken spinus > process at L3 right over the nerve that runs to his R knee pain, Does he > see a Neurologist or Neurosurgeon? The primary today was no help. He > doesn't understand all this and doesn't want to. So I can ask for what > ever Doc and tests I want. I was very upset with him today for his > response to the problems found. That's a whole other story. Dylan's EKG > today still showed him in Bradycardia still,(Two weeks now that I know > of) which no-one is taking seriously. His HR during that 1 minute test > was 46. He is not a trained athlete, he is a child that has laid in bed > for two years. Drives me crazy! My gut tells me this is a problem. A big > problem. We got back late from the Doc's so, Monday I'll call a > cardiologist. I can only find one Dr in Michigan that treats autonomic > dysfunction but I don't know if he is a heart Dr. I'll find out Monday. > I don't want him to have a pacemaker if the Autonomic dysfunction isn't > addressed at the same time. From what I have read, the autonomic > dysfunction can cause the bradycardia, and then he'd have a pace maker > when the heart was never the problem. This is all getting so darned > complicated. I'm afraid if I take him to a regular heart Dr, they'd want > to put in the pacemaker. We just have to get to Dr Grubbs!. I am > changing insurance to better suit Dylan's needs, but it doesn't start > till Oct 1. Till then, I'm stuck with who ever is in my book. How in > the heck do you pick a name of a Dr. in a book? More things show up > every day. Today he has been dizzy. Yesterday his foot zapped him > everytime he put weight on it. Sorry this is getting long, but I'm > frustrated. He's 17 and the Dang Doc just isn't helpful with these new > problems found. He admitted it was over his head. I like that a Doc can > admit that but where do I go from here? I have to start Monday. I know > there are nurses in this group, where do I take him? > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
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