Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Lana, A little while ago I did a search for Arnold Chiari Malformation type 1 (if I remember right, adult onset type), and it was odd reading what it said, so much sounded familiar... I guess that is what you are thinking too. But then again, the two of you have " talked " about our necks before... right now I am reading posts with the newest ones first, so I haven't gotten to 's post yet, but I'll read it with interest... But I better get my butt to bed now... It is getting real late. I took Peanut out, and met several neighbors outside, where they were socializing and enjoying the cool breeze after a long and really hot day. So we ended out sitting there for a long time. I had to drag Peanut with me back in, because the ladies love her, and she sniffed her way to the cat food one of them had, and of course wanted some. She is nuts about cat food. She got some and then she was like glued to the lady, crying for more. She is so funny... I just caught her having a ball on the loveseat, had taken her " flying saucer " (Rubber Kong thingie with treats inside) with her up there without me noticing it. Well that is just what mom needs, " kibble porridge " with hot dog and cheese on the coach!!! I don't have much lights on right how, but I might as well not turn any on, to see how the disaster really looks. There's always tomorrow... Maybe I'll have to ask my colleague to give me back my Little Green Clean Machine which she has enjoyed for a couple of years? LOL... hugs, Aase Marit >, is there any information on what you've written below, like >articles or whatever?? Let me tell you what I've been experiencing. >About 4-5 years ago, I had cranial decompression surgery to my brain >due to having Trigeminol Neuralgia. The surgery was successful and >the TN went away, thank God. I've NEVER had pain like that! Fast >forward to today, and I also suffer from migraines. I also have >cervical spinal stenosis, with large areas of herniation and bone >spurs. A spinal clinic did the MRI. They sent me to physical >therapy, and that helped the headaches so far. What my question is, >is how do I tell if my headaches are from the stenosis, or perhaps a >fluid leak, or perhaps like below, aquired chiari?? Wouldn't they >have seen this on the MRI? Is there any statistical evidence that >previous brain surgeries can cause this, or cause chiari? How would >I go about finding out, besides going to New York? If one did decide >to go to New York, would it be covered through insurance? What kinds >of referrals do you need for that? How does one go about finding >someone close who CAN spot something like this?? I live in Omaha, NE >where there is a teaching medical hospital - University of Nebraska >Medical Center. > >Any insight you may have would interest me, , and I do thank you >for posting about this. I've been reading the chiari posts with >interest, but have kind of disregarded it, but am now wondering if it >should be pursued? > >Love Lana > > > >> I'll add some info below on three different aquired /or entwined >> cases of chiari where Elhers danlos is known in two of them - >> and csf leaks involved in the whole pic. too . Two of these are >> folks with INTERMITTANT leaks - not always present or >> manifesting to the same degree / and my current understanding >> of a plan underway to better locate the leak ect . >> Basically -- she'd had skull surgery for ANOTHER condition with >> MRI " S showing NO chiari prior to that surgery --THEN developed >> chiari symtpoms and new MRI's showed an aquired chiari . >> >> NIH ( Dr Heiss ) offered care ( her local doctors had been >> bewildered for a couple years at that point --and had NOT found >> the chairi quickly depite it being evident on MRI's taken three >> months post the first surgery ) -- and she accepted the offer to go >> to NIH . Dr Heiss determined that the chiari had developed as a >> result of a csf leak in her brain following the first surgery --and > > felt because of the closed hydrodynamic's involved in sustaining >> the herniation / ONLY decompresion of the chiari would have a >> hope of alleviation of the symtpoms . NO leak could be seen on >> MRI's with gadolinium ect as remaining - but once sucked down >> - those tonsils REMAIN down with a suction action keeping them >> in the spinal cannal too . >> >> He carried out decompresion -being unable to find any >> continuing leak -- but surgery to decompress the chiari DID Stop >> the symtpoms of compression /cranial nerve dysfunction and >> headaches ect . > > > > > >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 11, 2004 Report Share Posted August 11, 2004 , is there any information on what you've written below, like articles or whatever?? Let me tell you what I've been experiencing. About 4-5 years ago, I had cranial decompression surgery to my brain due to having Trigeminol Neuralgia. The surgery was successful and the TN went away, thank God. I've NEVER had pain like that! Fast forward to today, and I also suffer from migraines. I also have cervical spinal stenosis, with large areas of herniation and bone spurs. A spinal clinic did the MRI. They sent me to physical therapy, and that helped the headaches so far. What my question is, is how do I tell if my headaches are from the stenosis, or perhaps a fluid leak, or perhaps like below, aquired chiari?? Wouldn't they have seen this on the MRI? Is there any statistical evidence that previous brain surgeries can cause this, or cause chiari? How would I go about finding out, besides going to New York? If one did decide to go to New York, would it be covered through insurance? What kinds of referrals do you need for that? How does one go about finding someone close who CAN spot something like this?? I live in Omaha, NE where there is a teaching medical hospital - University of Nebraska Medical Center. Any insight you may have would interest me, , and I do thank you for posting about this. I've been reading the chiari posts with interest, but have kind of disregarded it, but am now wondering if it should be pursued? Love Lana > I'll add some info below on three different aquired /or entwined > cases of chiari where Elhers danlos is known in two of them - > and csf leaks involved in the whole pic. too . Two of these are > folks with INTERMITTANT leaks - not always present or > manifesting to the same degree / and my current understanding > of a plan underway to better locate the leak ect . > Basically -- she'd had skull surgery for ANOTHER condition with > MRI " S showing NO chiari prior to that surgery --THEN developed > chiari symtpoms and new MRI's showed an aquired chiari . > > NIH ( Dr Heiss ) offered care ( her local doctors had been > bewildered for a couple years at that point --and had NOT found > the chairi quickly depite it being evident on MRI's taken three > months post the first surgery ) -- and she accepted the offer to go > to NIH . Dr Heiss determined that the chiari had developed as a > result of a csf leak in her brain following the first surgery --and > felt because of the closed hydrodynamic's involved in sustaining > the herniation / ONLY decompresion of the chiari would have a > hope of alleviation of the symtpoms . NO leak could be seen on > MRI's with gadolinium ect as remaining - but once sucked down > - those tonsils REMAIN down with a suction action keeping them > in the spinal cannal too . > > He carried out decompresion -being unable to find any > continuing leak -- but surgery to decompress the chiari DID Stop > the symtpoms of compression /cranial nerve dysfunction and > headaches ect . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Some of the symptoms of chiari and EDS can overlap, but i can tell you that EDS has really complicated the chiari for me. It's the cause of my fusion not taking. I think that's the hardest thing for me to grasp the thought of having to be refused. When the fusion was done Dr. B told me that generally your ligaments are the consistency of leather, due to the EDS mine were that of tissue paper. It's not a wonder i still have so much cervical instability. Re: spinal fluid leaks > Hi Lana, > > A little while ago I did a search for Arnold Chiari Malformation type > 1 (if I remember right, adult onset type), and it was odd reading > what it said, so much sounded familiar... I guess that is what you > are thinking too. But then again, the two of you have " talked " about > our necks before... right now I am reading posts with the newest ones > first, so I haven't gotten to 's post yet, but I'll read it with > interest... > > But I better get my butt to bed now... It is getting real late. I > took Peanut out, and met several neighbors outside, where they were > socializing and enjoying the cool breeze after a long and really hot > day. So we ended out sitting there for a long time. I had to drag > Peanut with me back in, because the ladies love her, and she sniffed > her way to the cat food one of them had, and of course wanted some. > She is nuts about cat food. She got some and then she was like glued > to the lady, crying for more. She is so funny... I just caught her > having a ball on the loveseat, had taken her " flying saucer " (Rubber > Kong thingie with treats inside) with her up there without me > noticing it. Well that is just what mom needs, " kibble porridge " with > hot dog and cheese on the coach!!! I don't have much lights on right > how, but I might as well not turn any on, to see how the disaster > really looks. There's always tomorrow... Maybe I'll have to ask my > colleague to give me back my Little Green Clean Machine which she has > enjoyed for a couple of years? LOL... > > > > hugs, > Aase Marit > > >, is there any information on what you've written below, like > >articles or whatever?? Let me tell you what I've been experiencing. > >About 4-5 years ago, I had cranial decompression surgery to my brain > >due to having Trigeminol Neuralgia. The surgery was successful and > >the TN went away, thank God. I've NEVER had pain like that! Fast > >forward to today, and I also suffer from migraines. I also have > >cervical spinal stenosis, with large areas of herniation and bone > >spurs. A spinal clinic did the MRI. They sent me to physical > >therapy, and that helped the headaches so far. What my question is, > >is how do I tell if my headaches are from the stenosis, or perhaps a > >fluid leak, or perhaps like below, aquired chiari?? Wouldn't they > >have seen this on the MRI? Is there any statistical evidence that > >previous brain surgeries can cause this, or cause chiari? How would > >I go about finding out, besides going to New York? If one did decide > >to go to New York, would it be covered through insurance? What kinds > >of referrals do you need for that? How does one go about finding > >someone close who CAN spot something like this?? I live in Omaha, NE > >where there is a teaching medical hospital - University of Nebraska > >Medical Center. > > > >Any insight you may have would interest me, , and I do thank you > >for posting about this. I've been reading the chiari posts with > >interest, but have kind of disregarded it, but am now wondering if it > >should be pursued? > > > >Love Lana > > > > > > > >> I'll add some info below on three different aquired /or entwined > >> cases of chiari where Elhers danlos is known in two of them - > >> and csf leaks involved in the whole pic. too . Two of these are > >> folks with INTERMITTANT leaks - not always present or > >> manifesting to the same degree / and my current understanding > >> of a plan underway to better locate the leak ect . > >> Basically -- she'd had skull surgery for ANOTHER condition with > >> MRI " S showing NO chiari prior to that surgery --THEN developed > >> chiari symtpoms and new MRI's showed an aquired chiari . > >> > >> NIH ( Dr Heiss ) offered care ( her local doctors had been > >> bewildered for a couple years at that point --and had NOT found > >> the chairi quickly depite it being evident on MRI's taken three > >> months post the first surgery ) -- and she accepted the offer to go > >> to NIH . Dr Heiss determined that the chiari had developed as a > >> result of a csf leak in her brain following the first surgery --and > > > felt because of the closed hydrodynamic's involved in sustaining > >> the herniation / ONLY decompresion of the chiari would have a > >> hope of alleviation of the symtpoms . NO leak could be seen on > >> MRI's with gadolinium ect as remaining - but once sucked down > >> - those tonsils REMAIN down with a suction action keeping them > >> in the spinal cannal too . > >> > >> He carried out decompresion -being unable to find any > >> continuing leak -- but surgery to decompress the chiari DID Stop > >> the symtpoms of compression /cranial nerve dysfunction and > >> headaches ect . > > > > > > > > > > > >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 12, 2004 Report Share Posted August 12, 2004 Some of the symptoms of chiari and EDS can overlap, but i can tell you that EDS has really complicated the chiari for me. It's the cause of my fusion not taking. I think that's the hardest thing for me to grasp the thought of having to be refused. When the fusion was done Dr. B told me that generally your ligaments are the consistency of leather, due to the EDS mine were that of tissue paper. It's not a wonder i still have so much cervical instability. Re: spinal fluid leaks > Hi Lana, > > A little while ago I did a search for Arnold Chiari Malformation type > 1 (if I remember right, adult onset type), and it was odd reading > what it said, so much sounded familiar... I guess that is what you > are thinking too. But then again, the two of you have " talked " about > our necks before... right now I am reading posts with the newest ones > first, so I haven't gotten to 's post yet, but I'll read it with > interest... > > But I better get my butt to bed now... It is getting real late. I > took Peanut out, and met several neighbors outside, where they were > socializing and enjoying the cool breeze after a long and really hot > day. So we ended out sitting there for a long time. I had to drag > Peanut with me back in, because the ladies love her, and she sniffed > her way to the cat food one of them had, and of course wanted some. > She is nuts about cat food. She got some and then she was like glued > to the lady, crying for more. She is so funny... I just caught her > having a ball on the loveseat, had taken her " flying saucer " (Rubber > Kong thingie with treats inside) with her up there without me > noticing it. Well that is just what mom needs, " kibble porridge " with > hot dog and cheese on the coach!!! I don't have much lights on right > how, but I might as well not turn any on, to see how the disaster > really looks. There's always tomorrow... Maybe I'll have to ask my > colleague to give me back my Little Green Clean Machine which she has > enjoyed for a couple of years? LOL... > > > > hugs, > Aase Marit > > >, is there any information on what you've written below, like > >articles or whatever?? Let me tell you what I've been experiencing. > >About 4-5 years ago, I had cranial decompression surgery to my brain > >due to having Trigeminol Neuralgia. The surgery was successful and > >the TN went away, thank God. I've NEVER had pain like that! Fast > >forward to today, and I also suffer from migraines. I also have > >cervical spinal stenosis, with large areas of herniation and bone > >spurs. A spinal clinic did the MRI. They sent me to physical > >therapy, and that helped the headaches so far. What my question is, > >is how do I tell if my headaches are from the stenosis, or perhaps a > >fluid leak, or perhaps like below, aquired chiari?? Wouldn't they > >have seen this on the MRI? Is there any statistical evidence that > >previous brain surgeries can cause this, or cause chiari? How would > >I go about finding out, besides going to New York? If one did decide > >to go to New York, would it be covered through insurance? What kinds > >of referrals do you need for that? How does one go about finding > >someone close who CAN spot something like this?? I live in Omaha, NE > >where there is a teaching medical hospital - University of Nebraska > >Medical Center. > > > >Any insight you may have would interest me, , and I do thank you > >for posting about this. I've been reading the chiari posts with > >interest, but have kind of disregarded it, but am now wondering if it > >should be pursued? > > > >Love Lana > > > > > > > >> I'll add some info below on three different aquired /or entwined > >> cases of chiari where Elhers danlos is known in two of them - > >> and csf leaks involved in the whole pic. too . Two of these are > >> folks with INTERMITTANT leaks - not always present or > >> manifesting to the same degree / and my current understanding > >> of a plan underway to better locate the leak ect . > >> Basically -- she'd had skull surgery for ANOTHER condition with > >> MRI " S showing NO chiari prior to that surgery --THEN developed > >> chiari symtpoms and new MRI's showed an aquired chiari . > >> > >> NIH ( Dr Heiss ) offered care ( her local doctors had been > >> bewildered for a couple years at that point --and had NOT found > >> the chairi quickly depite it being evident on MRI's taken three > >> months post the first surgery ) -- and she accepted the offer to go > >> to NIH . Dr Heiss determined that the chiari had developed as a > >> result of a csf leak in her brain following the first surgery --and > > > felt because of the closed hydrodynamic's involved in sustaining > >> the herniation / ONLY decompresion of the chiari would have a > >> hope of alleviation of the symtpoms . NO leak could be seen on > >> MRI's with gadolinium ect as remaining - but once sucked down > >> - those tonsils REMAIN down with a suction action keeping them > >> in the spinal cannal too . > >> > >> He carried out decompresion -being unable to find any > >> continuing leak -- but surgery to decompress the chiari DID Stop > >> the symtpoms of compression /cranial nerve dysfunction and > >> headaches ect . > > > > > > > > > > > >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 12, 2004 Report Share Posted August 12, 2004 > > I'll add some info below on three different aquired /or entwined > > cases of chiari where Elhers danlos is known in two of them - > > and csf leaks involved in the whole pic. too . Two of these are > > folks with INTERMITTANT leaks - not always present or > > manifesting to the same degree / and my current understanding > > of a plan underway to better locate the leak ect . > > Basically -- she'd had skull surgery for ANOTHER condition with > > MRI " S showing NO chiari prior to that surgery --THEN developed > > chiari symtpoms and new MRI's showed an aquired chiari . > > > > NIH ( Dr Heiss ) offered care ( her local doctors had been > > bewildered for a couple years at that point --and had NOT found > > the chairi quickly depite it being evident on MRI's taken three > > months post the first surgery ) -- and she accepted the offer to go > > to NIH . Dr Heiss determined that the chiari had developed as a > > result of a csf leak in her brain following the first surgery --and > > felt because of the closed hydrodynamic's involved in sustaining > > the herniation / ONLY decompresion of the chiari would have a > > hope of alleviation of the symtpoms . NO leak could be seen on > > MRI's with gadolinium ect as remaining - but once sucked down > > - those tonsils REMAIN down with a suction action keeping them > > in the spinal cannal too . > > > > He carried out decompresion -being unable to find any > > continuing leak -- but surgery to decompress the chiari DID Stop > > the symtpoms of compression /cranial nerve dysfunction and > > headaches ect . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 > > I'll add some info below on three different aquired /or entwined > > cases of chiari where Elhers danlos is known in two of them - > > and csf leaks involved in the whole pic. too . Two of these are > > folks with INTERMITTANT leaks - not always present or > > manifesting to the same degree / and my current understanding > > of a plan underway to better locate the leak ect . > > Basically -- she'd had skull surgery for ANOTHER condition with > > MRI " S showing NO chiari prior to that surgery --THEN developed > > chiari symtpoms and new MRI's showed an aquired chiari . > > > > NIH ( Dr Heiss ) offered care ( her local doctors had been > > bewildered for a couple years at that point --and had NOT found > > the chairi quickly depite it being evident on MRI's taken three > > months post the first surgery ) -- and she accepted the offer to go > > to NIH . Dr Heiss determined that the chiari had developed as a > > result of a csf leak in her brain following the first surgery --and > > felt because of the closed hydrodynamic's involved in sustaining > > the herniation / ONLY decompresion of the chiari would have a > > hope of alleviation of the symtpoms . NO leak could be seen on > > MRI's with gadolinium ect as remaining - but once sucked down > > - those tonsils REMAIN down with a suction action keeping them > > in the spinal cannal too . > > > > He carried out decompresion -being unable to find any > > continuing leak -- but surgery to decompress the chiari DID Stop > > the symtpoms of compression /cranial nerve dysfunction and > > headaches ect . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 , you have been EXTREMELY helpful! Thank you so much! I will read my private email tonight and talk with my husband and then get back to you, OK? I so appreciate all the information! Love Lana > > > I'll add some info below on three different aquired /or > entwined > > > cases of chiari where Elhers danlos is known in two of them > - > > > and csf leaks involved in the whole pic. too . Two of these are > > > folks with INTERMITTANT leaks - not always present or > > > manifesting to the same degree / and my current > understanding > > > of a plan underway to better locate the leak ect . > > > Basically -- she'd had skull surgery for ANOTHER condition > with > > > MRI " S showing NO chiari prior to that surgery --THEN > developed > > > chiari symtpoms and new MRI's showed an aquired chiari . > > > > > > NIH ( Dr Heiss ) offered care ( her local doctors had been > > > bewildered for a couple years at that point --and had NOT > found > > > the chairi quickly depite it being evident on MRI's taken three > > > months post the first surgery ) -- and she accepted the offer > to go > > > to NIH . Dr Heiss determined that the chiari had developed > as a > > > result of a csf leak in her brain following the first surgery > --and > > > felt because of the closed hydrodynamic's involved in > sustaining > > > the herniation / ONLY decompresion of the chiari would have > a > > > hope of alleviation of the symtpoms . NO leak could be seen > on > > > MRI's with gadolinium ect as remaining - but once sucked > down > > > - those tonsils REMAIN down with a suction action keeping > them > > > in the spinal cannal too . > > > > > > He carried out decompresion -being unable to find any > > > continuing leak -- but surgery to decompress the chiari DID > Stop > > > the symtpoms of compression /cranial nerve dysfunction and > > > headaches ect . Quote Link to comment Share on other sites More sharing options...
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