Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 , I pray you continue to get good answers, the kind that don't require surgery or such. As for failed fusion, I believe 's neck fusion failed, but she hasn't been on the list for awhile. If you want, you can write me privately and I'll see if I can send you her email address. What type of collar are you talking about? I've worn a soft collar, as well as my Sis and . Love Lana 0:-) An update on me As a lot of you know I've been having a lot of syncope episodes daily, Dr. B ordered an mri and eeg which turned out normal, then i had a 24 hour holter anda 24 hour eeg. The 24 hour eeg turned out normal but much to my surprise the holter did not. It showed my heartrte dropping from 100 down to 40. I've been seeing a cardiologist who did an echo and a nuclear study to check for defects and praise the lord that came back normal also. Now I'm scheduled for an EP study this friday, taht's where they run a catheter up a vein through the groin up to your heart and put a wire through the catheter and send small electrical impulses to see how your heart reacts determining the need for a pacemaker. I went to new york last wednesday to see Dr. B for my 6 month follow up. Theres a few things going on. First my incision is still not healing, before they had said not to use silver nitrate to cauterize it, but now Dr. B said he still doesn't like the idea but to do whatever it takes to get it healed. My pcp gave me the name of a plastic surgeon who specializes in wound care. The wound issues are due to the eds. Also Dr. B said due to the syncope issues and a couple other things my fusion may have failed so I'm having some xrays and am going to be wearing a cervicalthoracic collar to see who it helps my symptoms. You can see a picture of it here http://www.aspencollar.com/PC_CTO.html Dr. B feels that more than likely i will need a pacemaker because he said if there was brainstem involvement it still wouldnt' cause my heart rate to drop that low, what i didn't think to mention to him was the the holter showed it doing that in my sleep not during the day or during my syncope episodes. He is anxious to see the results of the EP study, whereas I'm anxious about having to have it done. As far as the severe headaches I'm having that could be from problems with the wound or from a potential problem with the plate, it's hard to tell. There was one spot on my neck that hurt like heck when Dr. B would push down on it and he kept on trying it and it kept on hurting. It just so happens that's the spot as one of the problem spots of my incision. He injected a local anesthetic and it still didn't keep it from hurting when he pressed on it, but i know it took effect because i couldn't feel him touching it. Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? I know I'm full of questions and we'll eventually figure this out, I'm just so tired of constantly being in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 , I pray you continue to get good answers, the kind that don't require surgery or such. As for failed fusion, I believe 's neck fusion failed, but she hasn't been on the list for awhile. If you want, you can write me privately and I'll see if I can send you her email address. What type of collar are you talking about? I've worn a soft collar, as well as my Sis and . Love Lana 0:-) An update on me As a lot of you know I've been having a lot of syncope episodes daily, Dr. B ordered an mri and eeg which turned out normal, then i had a 24 hour holter anda 24 hour eeg. The 24 hour eeg turned out normal but much to my surprise the holter did not. It showed my heartrte dropping from 100 down to 40. I've been seeing a cardiologist who did an echo and a nuclear study to check for defects and praise the lord that came back normal also. Now I'm scheduled for an EP study this friday, taht's where they run a catheter up a vein through the groin up to your heart and put a wire through the catheter and send small electrical impulses to see how your heart reacts determining the need for a pacemaker. I went to new york last wednesday to see Dr. B for my 6 month follow up. Theres a few things going on. First my incision is still not healing, before they had said not to use silver nitrate to cauterize it, but now Dr. B said he still doesn't like the idea but to do whatever it takes to get it healed. My pcp gave me the name of a plastic surgeon who specializes in wound care. The wound issues are due to the eds. Also Dr. B said due to the syncope issues and a couple other things my fusion may have failed so I'm having some xrays and am going to be wearing a cervicalthoracic collar to see who it helps my symptoms. You can see a picture of it here http://www.aspencollar.com/PC_CTO.html Dr. B feels that more than likely i will need a pacemaker because he said if there was brainstem involvement it still wouldnt' cause my heart rate to drop that low, what i didn't think to mention to him was the the holter showed it doing that in my sleep not during the day or during my syncope episodes. He is anxious to see the results of the EP study, whereas I'm anxious about having to have it done. As far as the severe headaches I'm having that could be from problems with the wound or from a potential problem with the plate, it's hard to tell. There was one spot on my neck that hurt like heck when Dr. B would push down on it and he kept on trying it and it kept on hurting. It just so happens that's the spot as one of the problem spots of my incision. He injected a local anesthetic and it still didn't keep it from hurting when he pressed on it, but i know it took effect because i couldn't feel him touching it. Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? I know I'm full of questions and we'll eventually figure this out, I'm just so tired of constantly being in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 , I pray you continue to get good answers, the kind that don't require surgery or such. As for failed fusion, I believe 's neck fusion failed, but she hasn't been on the list for awhile. If you want, you can write me privately and I'll see if I can send you her email address. What type of collar are you talking about? I've worn a soft collar, as well as my Sis and . Love Lana 0:-) An update on me As a lot of you know I've been having a lot of syncope episodes daily, Dr. B ordered an mri and eeg which turned out normal, then i had a 24 hour holter anda 24 hour eeg. The 24 hour eeg turned out normal but much to my surprise the holter did not. It showed my heartrte dropping from 100 down to 40. I've been seeing a cardiologist who did an echo and a nuclear study to check for defects and praise the lord that came back normal also. Now I'm scheduled for an EP study this friday, taht's where they run a catheter up a vein through the groin up to your heart and put a wire through the catheter and send small electrical impulses to see how your heart reacts determining the need for a pacemaker. I went to new york last wednesday to see Dr. B for my 6 month follow up. Theres a few things going on. First my incision is still not healing, before they had said not to use silver nitrate to cauterize it, but now Dr. B said he still doesn't like the idea but to do whatever it takes to get it healed. My pcp gave me the name of a plastic surgeon who specializes in wound care. The wound issues are due to the eds. Also Dr. B said due to the syncope issues and a couple other things my fusion may have failed so I'm having some xrays and am going to be wearing a cervicalthoracic collar to see who it helps my symptoms. You can see a picture of it here http://www.aspencollar.com/PC_CTO.html Dr. B feels that more than likely i will need a pacemaker because he said if there was brainstem involvement it still wouldnt' cause my heart rate to drop that low, what i didn't think to mention to him was the the holter showed it doing that in my sleep not during the day or during my syncope episodes. He is anxious to see the results of the EP study, whereas I'm anxious about having to have it done. As far as the severe headaches I'm having that could be from problems with the wound or from a potential problem with the plate, it's hard to tell. There was one spot on my neck that hurt like heck when Dr. B would push down on it and he kept on trying it and it kept on hurting. It just so happens that's the spot as one of the problem spots of my incision. He injected a local anesthetic and it still didn't keep it from hurting when he pressed on it, but i know it took effect because i couldn't feel him touching it. Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? I know I'm full of questions and we'll eventually figure this out, I'm just so tired of constantly being in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 sure you can email me her address I'm really looking for answers on this. It's a brace that goes on your thoracic area and then a regular aspen hard collar and there are two rods that attach the two that you can adjust. Basically it helps to lift my head up mimicing what a fusion would do. I'm already fused from my skull to C4 but if it has failed then i can see why i still get relief from my head being pulled up. An update on me As a lot of you know I've been having a lot of syncope episodes daily, Dr. B ordered an mri and eeg which turned out normal, then i had a 24 hour holter anda 24 hour eeg. The 24 hour eeg turned out normal but much to my surprise the holter did not. It showed my heartrte dropping from 100 down to 40. I've been seeing a cardiologist who did an echo and a nuclear study to check for defects and praise the lord that came back normal also. Now I'm scheduled for an EP study this friday, taht's where they run a catheter up a vein through the groin up to your heart and put a wire through the catheter and send small electrical impulses to see how your heart reacts determining the need for a pacemaker. I went to new york last wednesday to see Dr. B for my 6 month follow up. Theres a few things going on. First my incision is still not healing, before they had said not to use silver nitrate to cauterize it, but now Dr. B said he still doesn't like the idea but to do whatever it takes to get it healed. My pcp gave me the name of a plastic surgeon who specializes in wound care. The wound issues are due to the eds. Also Dr. B said due to the syncope issues and a couple other things my fusion may have failed so I'm having some xrays and am going to be wearing a cervicalthoracic collar to see who it helps my symptoms. You can see a picture of it here http://www.aspencollar.com/PC_CTO.html Dr. B feels that more than likely i will need a pacemaker because he said if there was brainstem involvement it still wouldnt' cause my heart rate to drop that low, what i didn't think to mention to him was the the holter showed it doing that in my sleep not during the day or during my syncope episodes. He is anxious to see the results of the EP study, whereas I'm anxious about having to have it done. As far as the severe headaches I'm having that could be from problems with the wound or from a potential problem with the plate, it's hard to tell. There was one spot on my neck that hurt like heck when Dr. B would push down on it and he kept on trying it and it kept on hurting. It just so happens that's the spot as one of the problem spots of my incision. He injected a local anesthetic and it still didn't keep it from hurting when he pressed on it, but i know it took effect because i couldn't feel him touching it. Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? I know I'm full of questions and we'll eventually figure this out, I'm just so tired of constantly being in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 sure you can email me her address I'm really looking for answers on this. It's a brace that goes on your thoracic area and then a regular aspen hard collar and there are two rods that attach the two that you can adjust. Basically it helps to lift my head up mimicing what a fusion would do. I'm already fused from my skull to C4 but if it has failed then i can see why i still get relief from my head being pulled up. An update on me As a lot of you know I've been having a lot of syncope episodes daily, Dr. B ordered an mri and eeg which turned out normal, then i had a 24 hour holter anda 24 hour eeg. The 24 hour eeg turned out normal but much to my surprise the holter did not. It showed my heartrte dropping from 100 down to 40. I've been seeing a cardiologist who did an echo and a nuclear study to check for defects and praise the lord that came back normal also. Now I'm scheduled for an EP study this friday, taht's where they run a catheter up a vein through the groin up to your heart and put a wire through the catheter and send small electrical impulses to see how your heart reacts determining the need for a pacemaker. I went to new york last wednesday to see Dr. B for my 6 month follow up. Theres a few things going on. First my incision is still not healing, before they had said not to use silver nitrate to cauterize it, but now Dr. B said he still doesn't like the idea but to do whatever it takes to get it healed. My pcp gave me the name of a plastic surgeon who specializes in wound care. The wound issues are due to the eds. Also Dr. B said due to the syncope issues and a couple other things my fusion may have failed so I'm having some xrays and am going to be wearing a cervicalthoracic collar to see who it helps my symptoms. You can see a picture of it here http://www.aspencollar.com/PC_CTO.html Dr. B feels that more than likely i will need a pacemaker because he said if there was brainstem involvement it still wouldnt' cause my heart rate to drop that low, what i didn't think to mention to him was the the holter showed it doing that in my sleep not during the day or during my syncope episodes. He is anxious to see the results of the EP study, whereas I'm anxious about having to have it done. As far as the severe headaches I'm having that could be from problems with the wound or from a potential problem with the plate, it's hard to tell. There was one spot on my neck that hurt like heck when Dr. B would push down on it and he kept on trying it and it kept on hurting. It just so happens that's the spot as one of the problem spots of my incision. He injected a local anesthetic and it still didn't keep it from hurting when he pressed on it, but i know it took effect because i couldn't feel him touching it. Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? I know I'm full of questions and we'll eventually figure this out, I'm just so tired of constantly being in pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Oh , your cup runneth over. My prayers are with you, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Oh , your cup runneth over. My prayers are with you, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi , I can't help you out with the fusion or colar questions, but I have had heartrate issues (although my heart rate increases rapidly instead of slowing like yours). I had an EP study done several years ago, in my early 20's. I was nervous before the procedure, but (at least for me) it turned out to be a piece of cake. There was absolutely no pain involved, even though I kept waking up throughout the procedure (I didn't know I had problems with anasthesia until this procedure). Even when they were triggering heart rate changes and I was awake, I didn't feel sick or have pain or anything. I went into the study knowing that they might do RF Ablation during the procedure to try and fix my problem, but I turned out not to be a candidate for the ablation because of the results of the EP study. We also know the chances of me getting a pacemaker were pretty slim based on my symptoms, so I'm afraid that I can't help you out with your concerns about that part. If you have questions about the EP Study, let me know and I can try to answer them. Oh, as for scars, I did have 3 little scars (maybe 1/4 " each) in my bikini area, but now you have to know where they are to notice them, and let's face it, how many people are inspecting your bikini line for scars? Good luck with the study, and try not to feel too anxious about it (I know, easier said than done). > Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi , I can't help you out with the fusion or colar questions, but I have had heartrate issues (although my heart rate increases rapidly instead of slowing like yours). I had an EP study done several years ago, in my early 20's. I was nervous before the procedure, but (at least for me) it turned out to be a piece of cake. There was absolutely no pain involved, even though I kept waking up throughout the procedure (I didn't know I had problems with anasthesia until this procedure). Even when they were triggering heart rate changes and I was awake, I didn't feel sick or have pain or anything. I went into the study knowing that they might do RF Ablation during the procedure to try and fix my problem, but I turned out not to be a candidate for the ablation because of the results of the EP study. We also know the chances of me getting a pacemaker were pretty slim based on my symptoms, so I'm afraid that I can't help you out with your concerns about that part. If you have questions about the EP Study, let me know and I can try to answer them. Oh, as for scars, I did have 3 little scars (maybe 1/4 " each) in my bikini area, but now you have to know where they are to notice them, and let's face it, how many people are inspecting your bikini line for scars? Good luck with the study, and try not to feel too anxious about it (I know, easier said than done). > Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 thanks shannon it helps to hear something reassuring about it. I'm not worried about scars i have a 15 inch one down the back of my head and neck, no biggie and it looks awful. Re: An update on me Hi , I can't help you out with the fusion or colar questions, but I have had heartrate issues (although my heart rate increases rapidly instead of slowing like yours). I had an EP study done several years ago, in my early 20's. I was nervous before the procedure, but (at least for me) it turned out to be a piece of cake. There was absolutely no pain involved, even though I kept waking up throughout the procedure (I didn't know I had problems with anasthesia until this procedure). Even when they were triggering heart rate changes and I was awake, I didn't feel sick or have pain or anything. I went into the study knowing that they might do RF Ablation during the procedure to try and fix my problem, but I turned out not to be a candidate for the ablation because of the results of the EP study. We also know the chances of me getting a pacemaker were pretty slim based on my symptoms, so I'm afraid that I can't help you out with your concerns about that part. If you have questions about the EP Study, let me know and I can try to answer them. Oh, as for scars, I did have 3 little scars (maybe 1/4 " each) in my bikini area, but now you have to know where they are to notice them, and let's face it, how many people are inspecting your bikini line for scars? Good luck with the study, and try not to feel too anxious about it (I know, easier said than done). > Has anybody had their fusions fail before, had problems like this with their heartrate, or worn this type of collar before? > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi all, As usual it seems like i need to move to plan B as far as the headaches and diamox go. I have severe problems with my blood pressure being too low so I'm on florinef for that. It helps you to retain water so the sodium stays in your system longer and your bp goes up. At only 250 mgs of the diamox it had taken my BP way down and when i saw my cardiologist friday he wanted to know how high i was going to end up going, when i told him 1000-1500 mgs he said that wouldn't work. The diamox is a diuretic so it helps to get rid of excess fluid. So the two drugs are acting against each other. I emailed Dr. Bolognese about it and he replied yesterday saying we need to move on to plan B. I'm supposed to have Lumbar Punctures done every 7-10 days to remove 40cc's of fluid and hopefully help the headaches. I am not looking forward to this at all. First i need to find a doctor to do it though. I see a new neurologist a week from thursday and hopefully he can give me some insight as to who can do it, or who he recommends. I'm not going back to the nutcase that did it last time. Quote Link to comment Share on other sites More sharing options...
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