Guest guest Posted April 30, 2012 Report Share Posted April 30, 2012 Hi, This is , again from Mexico. It seems I have a meningocele right there in the surgery site. This is rare complication of decompression surgery, I have seen like 3 mexican doctors which does not have a clue on Chiari, and worst of all about Chiari surgery decompression, but all of them have told me that my surgeon cut a lot of bone, he told me he cut 3 centimeters of bone and this is too much, but the more I have seen suregeries from the US all have a cut of 3 centímeters. I just want to know how many of you have a long bone cut from 3 centimeters and who has a narrow one of less than one centimeter. For me, as far as I know the less you cut the worst it is, but the whole has to be of 3 centimeters with some exceptions. Tell me please how much did your doctor cut of bone, do you know? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2012 Report Share Posted May 3, 2012 , Omg, I am so sorry to hear what you're going through!! Are you sure you're talking cm & not mm? I know some people need laminectomies (complete removal of one or more vertebrae). I only had a laminotomy & was told 2 mm were taken off c-1 I believe. If you're talking skull I don't know how big the piece was that was removed on my surgery but I hope some others are responding. Wondering if asking your NS to call another expert NS - in the US or wherever - is an option? I'm so sorry I can't help more but please know I'm sending tons of prayers your way to find answers & fast! To: From: lfrade@... Date: Mon, 30 Apr 2012 12:21:34 -0500 Subject: Urgent question Hi, This is , again from Mexico. It seems I have a meningocele right there in the surgery site. This is rare complication of decompression surgery, I have seen like 3 mexican doctors which does not have a clue on Chiari, and worst of all about Chiari surgery decompression, but all of them have told me that my surgeon cut a lot of bone, he told me he cut 3 centimeters of bone and this is too much, but the more I have seen suregeries from the US all have a cut of 3 centímeters. I just want to know how many of you have a long bone cut from 3 centimeters and who has a narrow one of less than one centimeter. For me, as far as I know the less you cut the worst it is, but the whole has to be of 3 centimeters with some exceptions. Tell me please how much did your doctor cut of bone, do you know? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2012 Report Share Posted May 3, 2012 Thank you , What the surgean told me is that normally they cut 3 centimeters of the posterior fossa, and I have Debbie's RM too and she has a cut of 3 centimeters too, the problem in my case is that he did not cut the piece symmetrically, he cut 4 centimeters in the right side and 2 in the left side, then he cut almost 1 centímeter of the atlas in the right side and half of it in the left side, so I have a cyst in the left side, it seems that when Doctors do no open the space correctly a meningocele grows. So i will need another surgery. I really think that the last surgeon did not put my head straight when he made the surgery so this is why I have this problem because I have CSF in my ear again, I do not have a CSF ear leak as I had last year before sugery but my ear feels full of LCR. So I will have another surgery but know it will be very complicated to corrected!!! This is why I asked. No it is not possible for me to go the US, so I am looking for another Doctor here and of course we do not have Chiari experts here, the majority do not know this decease!!! Thank you for your answer. El 02/05/12 20:08, " Maresca " escribió: >, >Omg, I am so sorry to hear what you're going through!! >Are you sure you're talking cm & not mm? I know some people need >laminectomies (complete removal of one or more vertebrae). I only had a >laminotomy & was told 2 mm were taken off c-1 I believe. >If you're talking skull I don't know how big the piece was that was >removed on my surgery but I hope some others are responding. >Wondering if asking your NS to call another expert NS - in the US or >wherever - is an option? >I'm so sorry I can't help more but please know I'm sending tons of >prayers your way to find answers & fast! > > >To: >From: lfrade@... >Date: Mon, 30 Apr 2012 12:21:34 -0500 >Subject: Urgent question > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > >This is , again from Mexico. It seems I have a meningocele right >there > >in the surgery site. This is rare complication of decompression surgery, >I > >have seen like 3 mexican doctors which does not have a clue on Chiari, and > >worst of all about Chiari surgery decompression, but all of them have told > >me that my surgeon cut a lot of bone, he told me he cut 3 centimeters of > >bone and this is too much, but the more I have seen suregeries from the US > >all have a cut of 3 centímeters. I just want to know how many of you have >a > >long bone cut from 3 centimeters and who has a narrow one of less than one > >centimeter. For me, as far as I know the less you cut the worst it is, but > >the whole has to be of 3 centimeters with some exceptions. Tell me please > >how much did your doctor cut of bone, do you know? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 Can anyone connect with the flights that people do for charity to get her to the US? I'm sorry but this does not sound good at all to me, . I know you're probably in no position to, but did you check wacma.com for chiari experts in Mexico? Does anyone know of chiari knowledgeable docs in Mexico? I don't respond to a ton of posts bc I'm still recovering from surgery myself & the computer does NOT help my neck.. I personally feel that we on these lists are all related, if only by this monster condition... I am limited at present but can anyone help our chiari sister? Anyone who knows anyone in Mexico who is knowledgeable on chiari.. Pls respond to . , hang in there.. Hugs, love & prayers from NY. To: From: lfrade@... Date: Thu, 3 May 2012 05:35:36 -0500 Subject: Re: Urgent question Thank you , What the surgean told me is that normally they cut 3 centimeters of the posterior fossa, and I have Debbie's RM too and she has a cut of 3 centimeters too, the problem in my case is that he did not cut the piece symmetrically, he cut 4 centimeters in the right side and 2 in the left side, then he cut almost 1 centímeter of the atlas in the right side and half of it in the left side, so I have a cyst in the left side, it seems that when Doctors do no open the space correctly a meningocele grows. So i will need another surgery. I really think that the last surgeon did not put my head straight when he made the surgery so this is why I have this problem because I have CSF in my ear again, I do not have a CSF ear leak as I had last year before sugery but my ear feels full of LCR. So I will have another surgery but know it will be very complicated to corrected!!! This is why I asked. No it is not possible for me to go the US, so I am looking for another Doctor here and of course we do not have Chiari experts here, the majority do not know this decease!!! Thank you for your answer. El 02/05/12 20:08, " Maresca " escribió: >, >Omg, I am so sorry to hear what you're going through!! >Are you sure you're talking cm & not mm? I know some people need >laminectomies (complete removal of one or more vertebrae). I only had a >laminotomy & was told 2 mm were taken off c-1 I believe. >If you're talking skull I don't know how big the piece was that was >removed on my surgery but I hope some others are responding. >Wondering if asking your NS to call another expert NS - in the US or >wherever - is an option? >I'm so sorry I can't help more but please know I'm sending tons of >prayers your way to find answers & fast! > > >To: >From: lfrade@... >Date: Mon, 30 Apr 2012 12:21:34 -0500 >Subject: Urgent question > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > >This is , again from Mexico. It seems I have a meningocele right >there > >in the surgery site. This is rare complication of decompression surgery, >I > >have seen like 3 mexican doctors which does not have a clue on Chiari, and > >worst of all about Chiari surgery decompression, but all of them have told > >me that my surgeon cut a lot of bone, he told me he cut 3 centimeters of > >bone and this is too much, but the more I have seen suregeries from the US > >all have a cut of 3 centímeters. I just want to know how many of you have >a > >long bone cut from 3 centimeters and who has a narrow one of less than one > >centimeter. For me, as far as I know the less you cut the worst it is, but > >the whole has to be of 3 centimeters with some exceptions. Tell me please > >how much did your doctor cut of bone, do you know? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 Thank you , I will love to go the US but eventhough I could go there the problem is that I need a redo surgery and this is quite expensive. I have money for a trip but I do not have moeny for a surgery!!! The only ones who have experience for a redo surgery will be the TCI, I went there once for the first diagnosis and at that time they I told me I have TCS so I needed surgery when they first told me I was willing to have surgery there but I had to pay more than 150,000 usd in order to have it, as I do not have a US insurance, so even if I go to the US the problem will still be the surgery!!! You can imagine how many doctors I have seen here in Mexico and the majority of them are a bunch of Chiari IGNORANTS!!! But now I have found a pediatric neurosurgean who has experience operating children with Chiari, is the only one who has spoken the same Chiari language. So he is studying my case. I was willing to found out a Neurosurgean who has experience in the US so he could give an opinion of what to do, as my decompression surgery is a complete mess. The main problem is that the past neurosurgean did not cut symmetrically, he cut more in the right side than in the left, so I have 4 centímeters in the right side, and 2 in the left side, when it supposed to cut 3 centimeters in each side exactly. The worst side was the left as my tonsils were more compressed in this side, so now I have a meningocele in the left side mainly. I have read an article of Dr. Heiss who said that resistent syringomylia after surgery is caused because they do not cut enough bone and this is why a meningocele or cyts grows. In my case I have the cyst in the left side. In addition to this the atlas was reduced asymmetrically, he did not cut the left side either I have been seen MRIs of other people and see that doctors did cut like 3 centimeters you can measure that with Ossirix or DICOM but this was in the middle. As a result I also have one CSF leak realted to the surgery site and many others doward, but the doctors here do not worry about them they care about the nose CSF leak which I have since the year 2005!!! I was thinking that perhaps Milhorat could see my MRIs and give and opinion, my Neurosurgean really admires him, but they told he is not working anymore. Do someone has contact with him? I understand he is not making surgeries, but he can give an opinion on how to procede. Thank you for your advice, really. We are really sister in Chiarihood!!! El 03/05/12 20:27, " Maresca " escribió: >Can anyone connect with the flights that people do for charity to >get her to the US? >I'm sorry but this does not sound good at all to me, . I know you're >probably in no position to, but did you check wacma.com for chiari >experts in Mexico? Does anyone know of chiari knowledgeable docs in >Mexico? >I don't respond to a ton of posts bc I'm still recovering from surgery >myself & the computer does NOT help my neck.. I personally feel that we >on these lists are all related, if only by this monster condition... I am >limited at present but can anyone help our chiari sister? Anyone who >knows anyone in Mexico who is knowledgeable on chiari.. Pls respond to >. >, hang in there.. Hugs, love & prayers from NY. > >To: >From: lfrade@... >Date: Thu, 3 May 2012 05:35:36 -0500 >Subject: Re: Urgent question > > > > > > > > > > > > > > > > > > > > > > > > > > > Thank you , > > > >What the surgean told me is that normally they cut 3 centimeters of the > >posterior fossa, and I have Debbie's RM too and she has a cut of 3 > >centimeters too, the problem in my case is that he did not cut the piece > >symmetrically, he cut 4 centimeters in the right side and 2 in the left > >side, then he cut almost 1 centímeter of the atlas in the right side and > >half of it in the left side, so I have a cyst in the left side, it seems > >that when Doctors do no open the space correctly a meningocele grows. So i > >will need another surgery. I really think that the last surgeon did not > >put my head straight when he made the surgery so this is why I have this > >problem because I have CSF in my ear again, I do not have a CSF ear leak > >as I had last year before sugery but my ear feels full of LCR. So I will > >have another surgery but know it will be very complicated to corrected!!! > >This is why I asked. > > > >No it is not possible for me to go the US, so I am looking for another > >Doctor here and of course we do not have Chiari experts here, the majority > >do not know this decease!!! > > > > > > > >Thank you for your answer. > > > >El 02/05/12 20:08, " Maresca " escribió: > > > >>, > >>Omg, I am so sorry to hear what you're going through!! > >>Are you sure you're talking cm & not mm? I know some people need > >>laminectomies (complete removal of one or more vertebrae). I only had a > >>laminotomy & was told 2 mm were taken off c-1 I believe. > >>If you're talking skull I don't know how big the piece was that was > >>removed on my surgery but I hope some others are responding. > >>Wondering if asking your NS to call another expert NS - in the US or > >>wherever - is an option? > >>I'm so sorry I can't help more but please know I'm sending tons of > >>prayers your way to find answers & fast! > >> > >> > >>To: > >>From: lfrade@... > >>Date: Mon, 30 Apr 2012 12:21:34 -0500 > >>Subject: Urgent question > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Hi, > >> > >>This is , again from Mexico. It seems I have a meningocele right > >>there > >> > >>in the surgery site. This is rare complication of decompression surgery, > >>I > >> > >>have seen like 3 mexican doctors which does not have a clue on Chiari, >>and > >> > >>worst of all about Chiari surgery decompression, but all of them have >>told > >> > >>me that my surgeon cut a lot of bone, he told me he cut 3 centimeters of > >> > >>bone and this is too much, but the more I have seen suregeries from the >>US > >> > >>all have a cut of 3 centímeters. I just want to know how many of you have > >>a > >> > >>long bone cut from 3 centimeters and who has a narrow one of less than >>one > >> > >>centimeter. For me, as far as I know the less you cut the worst it is, >>but > >> > >>the whole has to be of 3 centimeters with some exceptions. Tell me please > >> > >>how much did your doctor cut of bone, do you know? > >> > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.