Aa
Neurology
I've had a family member say to me that she believed the result of the diagnosis of Chiari Zero made by my neurosurgeon is the cause of the meds I've taken (seizure as well as pain meds) that drs have given me to help control my symptoms throughout this 6+ yr painful process. After our first consultation with my neurosurgeon he ordered tests that no one has ever done, and they showed a lot. After all my test came back showing a CLEAR physical problem we discussed the details of the findings (the right side of my brain has a very large area where the spinal fluid has been building up, and have "pushed" my spinal cord & cerebellum both to the left side of my skull). He explained that this can have the same debilitating symptoms that I've had the last 6 years,and possibly even more for another person that Chiari 1 patients can have as well. I've spent the last 6 yrs searching for the root of this problem though ALL tests came back "normal", but these tests showed and told me a lot & the root of my pain and problems. I've done A LOT of research, and have found nothing to that being a cause of my diagnosis of Chiari Zero.
I'm just trying to see what someone else thinks/knows about this being a cause. There are people in my immediate family that have some of the symptoms of Chiari 1, but it seems that I'm the one who's gotten all of them! :) I'd really appreciate your time, and your insight to this question. Thank you very much.
I'm just trying to see what someone else thinks/knows about this being a cause. There are people in my immediate family that have some of the symptoms of Chiari 1, but it seems that I'm the one who's gotten all of them! :) I'd really appreciate your time, and your insight to this question. Thank you very much.
I was rereading my earlier post and I wanted to correct something I said. It may have come across misleading. When I said "If you have overcrowding and blockage or Hydrocephalus they will call it Chiari zero." What I actually meant was if you have Overcrowding and/or blockage but have a less then 5 mm protusion then they sometimes call that Chiari zero. Truth be told the key is finding out if you do indeed have a blockage and/or overcrowding. It doesn't matter how big of a herniation it is if it's causing those symptoms then you are at risk for a syrinx and tons of other problems.
Hope you find the answers you are searching for this Dr. I have no experience with him, but I have heard of him and everything I have heard has been positive.
Hope you find the answers you are searching for this Dr. I have no experience with him, but I have heard of him and everything I have heard has been positive.
Getting back to my NS hasn't happened yet. He's had to deal with some red tape issues. I should be getting a call to schedule my next appt within a few days.
Thank you for your insight. This is all very overwhelming, and it gets even more when people have their own opinions who've not gone through anything like this, but still feel that I need to "look into that". Through these 6 years I've seen A LOT of drs, but chiari has only been a recent possibility to acctually be a possible cause because I have a pacemaker which has ruled out ANY hope of an MRI! It took Dr. Rosner to think of and order the CT Myelogram & LP so that he was able to form as much of a 3Dpict. as possible. I've had blood pressure (very low) and low pulse my whole life, hence the pacemaker at 24. From that point it all seemed to get worse, more symptoms started to appear in a quick fashion, but yet every single test came back "normal". This lead to SO many drs not believing me at all, and some actually laughing out loud when I came to them asking for help. My pain mgmt dr pointed me in the chiari direction bc he is the one dr that knows me the best. He knew Dr. Rosner, but didn't know what his status was with his medical license in NC. I've read a lot of problems he's had to deal with the last few years, and for each bad there's a good. I'm REALLY needing to find someone who's had a bad time with him as well as a person who's had a positive one. He's the FIRST and ONLY person/dr who's taken time to look at symptoms I've had since I was 5, and think that it seems that these have all been evolving(chronic fatigue, epstien barr, fibromyalgia,...) into what I now am dealing with. I'm NOT going into this with only rose colored glasses on, but I'd be lieing if I were to say that I'm more hopeful than EVER that someone actually found the actual/REAL PHYSICAL problem that my "black & white" mind understands.
I have a list of questions for him when I have my next appointment, and I'm making sure I'm including the ideas from those I've heard from and those I've read about also. Eyes wide open!!!!
Thank you for your time, and for the suggestions that I make sure I take into consideration as I meet with him.
Thanks agiain - eyrin
Thank you for your insight. This is all very overwhelming, and it gets even more when people have their own opinions who've not gone through anything like this, but still feel that I need to "look into that". Through these 6 years I've seen A LOT of drs, but chiari has only been a recent possibility to acctually be a possible cause because I have a pacemaker which has ruled out ANY hope of an MRI! It took Dr. Rosner to think of and order the CT Myelogram & LP so that he was able to form as much of a 3Dpict. as possible. I've had blood pressure (very low) and low pulse my whole life, hence the pacemaker at 24. From that point it all seemed to get worse, more symptoms started to appear in a quick fashion, but yet every single test came back "normal". This lead to SO many drs not believing me at all, and some actually laughing out loud when I came to them asking for help. My pain mgmt dr pointed me in the chiari direction bc he is the one dr that knows me the best. He knew Dr. Rosner, but didn't know what his status was with his medical license in NC. I've read a lot of problems he's had to deal with the last few years, and for each bad there's a good. I'm REALLY needing to find someone who's had a bad time with him as well as a person who's had a positive one. He's the FIRST and ONLY person/dr who's taken time to look at symptoms I've had since I was 5, and think that it seems that these have all been evolving(chronic fatigue, epstien barr, fibromyalgia,...) into what I now am dealing with. I'm NOT going into this with only rose colored glasses on, but I'd be lieing if I were to say that I'm more hopeful than EVER that someone actually found the actual/REAL PHYSICAL problem that my "black & white" mind understands.
I have a list of questions for him when I have my next appointment, and I'm making sure I'm including the ideas from those I've heard from and those I've read about also. Eyes wide open!!!!
Thank you for your time, and for the suggestions that I make sure I take into consideration as I meet with him.
Thanks agiain - eyrin
I forgot to mention that sometimes inserting a shunt to drain off the excess csf can sometimes relieve a lot of the symptoms of csf build up. Did your Dr. mention this to you?
There are just so many methods of treatment and every Dr. seems to have their own way of treating it. I'm positive that there are many who will chime in who have had to deal with what you are experiencing that can help you more. At this time I do not have csf buildup just loss of flow in the 4th ventricle (Which I don't understand nor does my Dr.)
I can also tell you it's a good idea to get a full spine MRI to check for a Syrinx and make sure it's not building up somewhere else in your spine as well. A lot of Chiarians also have connective tissue disorders and/or autoimmune disorders so that is something to keep in mind as well.
I'm not trying to overwhelm you or scare with all this, just want you to be prepared to have every possiblity looked at that way all your bases are covered :)
Good Luck to you!!
((Hugs)) Stacie
There are just so many methods of treatment and every Dr. seems to have their own way of treating it. I'm positive that there are many who will chime in who have had to deal with what you are experiencing that can help you more. At this time I do not have csf buildup just loss of flow in the 4th ventricle (Which I don't understand nor does my Dr.)
I can also tell you it's a good idea to get a full spine MRI to check for a Syrinx and make sure it's not building up somewhere else in your spine as well. A lot of Chiarians also have connective tissue disorders and/or autoimmune disorders so that is something to keep in mind as well.
I'm not trying to overwhelm you or scare with all this, just want you to be prepared to have every possiblity looked at that way all your bases are covered :)
Good Luck to you!!
((Hugs)) Stacie
You have come to perfect place to "Think out loud" or Vent as I like to say...lol
Most everyone on here have our moments where we do just that. I totally understand how you are feeling.
Chiari Malformation is actually a malformation of the skull. Dr.s will sometimes measure the brain herniation or (Cerebellar ectopia or Cerebellar Tonsils) a lot of us have and determine rather it's Chiari 1 or Chiari zero. If you have overcrowding and blockage or Hydrocephalus they will call it Chiari zero. Or if the Dr. doing the measuring goes by the old standard of it has to be a 5mm or more herniation to be considered a true Chiari 1 Malformation. Truth be know it's not the length of the herniation that matters but rather you have overcrowding and/or blockage, which it sounds like you obviously do.
I have a 5.5 mm herniation where my cerebellum protrudes through the small hole at the base of my skull so I've been diagnosed with Chiari 1 however at this time I have chosen not to have the decompression surgery.
I just found a Dr. this past Oct. to properly Dx me but because he is not a Chiari specialist I have decided to wait until I can see a TRUE Chiari Specialist to decide if and when I really need surgery.
On this Journey the very best advice I have received was to skip all the in between dr.s and go staright to the top with a Chiari specialist. Too many Dr.s out there have heard about Chiari, but really know very little. There are a lot who even perform the surgery, but a lot of their patients end up here still needing help because the surgery was not done correctly.
There is a list of Chiari Specialist. You should check it out and see if there is a Dr. near you that is on that list and if so try and get in and see them.
Sounds like you are on the right path with this Dr. just seeing how he has done the proper test to check for overcrowding and blockage of CSF.
Stay in touch. There are many on here who can shed light and help you through this this. It is tough sometimes, but finding this forum has given me a place to come where people understand and listen when no one else in my day to day life does. or so I feel sometimes.
Most everyone on here have our moments where we do just that. I totally understand how you are feeling.
Chiari Malformation is actually a malformation of the skull. Dr.s will sometimes measure the brain herniation or (Cerebellar ectopia or Cerebellar Tonsils) a lot of us have and determine rather it's Chiari 1 or Chiari zero. If you have overcrowding and blockage or Hydrocephalus they will call it Chiari zero. Or if the Dr. doing the measuring goes by the old standard of it has to be a 5mm or more herniation to be considered a true Chiari 1 Malformation. Truth be know it's not the length of the herniation that matters but rather you have overcrowding and/or blockage, which it sounds like you obviously do.
I have a 5.5 mm herniation where my cerebellum protrudes through the small hole at the base of my skull so I've been diagnosed with Chiari 1 however at this time I have chosen not to have the decompression surgery.
I just found a Dr. this past Oct. to properly Dx me but because he is not a Chiari specialist I have decided to wait until I can see a TRUE Chiari Specialist to decide if and when I really need surgery.
On this Journey the very best advice I have received was to skip all the in between dr.s and go staright to the top with a Chiari specialist. Too many Dr.s out there have heard about Chiari, but really know very little. There are a lot who even perform the surgery, but a lot of their patients end up here still needing help because the surgery was not done correctly.
There is a list of Chiari Specialist. You should check it out and see if there is a Dr. near you that is on that list and if so try and get in and see them.
Sounds like you are on the right path with this Dr. just seeing how he has done the proper test to check for overcrowding and blockage of CSF.
Stay in touch. There are many on here who can shed light and help you through this this. It is tough sometimes, but finding this forum has given me a place to come where people understand and listen when no one else in my day to day life does. or so I feel sometimes.
I've done research on hydrocephalis as well. Is this what you were diagnosed with instead of chiari? If so, what path were you lead down? Has anything inparticular helped? I sleep sitting up a lot because my head doesn't hurt as bad as when I'm flat at times. I've also gone through a lot of dietary changes to see how that may be playing a part. Accupuncture (twice), chiropractor (seemed to make it hurt more in the 6 months I spent with him), getting off all meds (pain and other) to start over in a way, biofeedback, massage therapy...I feel that I've tried every route I can/could explore. But...
I am SO tired and overwhelmed by everything, even 6 years into this. I should be "comfortable" with this by now...I'm just ALONE! Yes, I've my friends & family (my parents live right next door, and my mom and I are best friends...she has bad migraines & can understand my pain more than anyone close to me) that are VERY supportive. BUT we live in the "sticks" & mid way up the side of a mountain, way out of town, across town from where my hubby teaches ie. my friends too...my drs are over there also. Tomorrow soccer season starts for my hubby (back to later nights), and my parents teach 45 mins away (one-way). I'm SO sorry! I'm not trying to sound as desperate as I am, and it is a rare occasion when I do. I just feel like for the very first time I've gotten SO close to the acctual problem (with a pacemaaker getting an MRI has made me MORE than complicated to diagnos), and I'm affraid that it's going to end in "let's try these meds this time to see how they can help" again! I don't know that there are any meds out there that I've not been prescribed! So...
Hydrocephalis...I need a personal experience, someone who's been diagnosed with it, and how they had it treated to give me some advice/direction...I'm a "black and white person", I taught math and science, and this "grey area I will live in bc we can't get a clear reason for my symtoms" (per my neuro - not NS) is not something I've been willing to accept, hence the continued research throughout these 6 years. I've come SO close! Closer than EVER/ANYTHING & I feel like it's going to send me back into that "grey" place.
I am MORE than aware that having chiari surgery is NOT going to fix me. It will hopefuly, through time, make some of my dibilitating symptoms more manageable. I would be over the moon happy with that bc it's at least some improvement. I'm not jumping up and down wanting surgery (brain surgery), but I feel like it's the thing that will help in some way. My scans show a very clear picture of the problem in my skull & how it's affecting the rest of my brain and spinal cord. With all the research I've done it seems that by being able to drain the built up fluid to make more room for what is supposed to be happening would be the ideal solution. It just seems that with the three positive things/steps/findings there's two negatives that come with it.
I will be called sometime this next week to meet with the NS again. He's having to deal with the red tape within the hospital he'll be working in, but that's coming to a close this week. And with all I've heard and tried to find out "they" (the hospital board) are wanting him reinstated bc of the people he has helped. As I/we find out more of what is wrong with me, and what can actually happen to help me I'm trying to keep things in perspective. No "cart before the horse" happening...at least as much as I can try to make myself.
If you've been patient enough and kind enough to listen to all of what I laid out...THANK YOU! There's not many people, well only a few actually, that can listen...actually listen and not just nod their head when I'm thinking out loud. I appreciate you and the time you have taken just now. If you would rather not write back I am more than understanding with that decision. But I will promise to keep any further "thinking out loud" moments to a smaller amount. I am now going to focus more of my research in the direction of the hydrocephalis route as I go forward. Thank you for that direction. And again, thank you so so very much for your time. - Eyrin
I am SO tired and overwhelmed by everything, even 6 years into this. I should be "comfortable" with this by now...I'm just ALONE! Yes, I've my friends & family (my parents live right next door, and my mom and I are best friends...she has bad migraines & can understand my pain more than anyone close to me) that are VERY supportive. BUT we live in the "sticks" & mid way up the side of a mountain, way out of town, across town from where my hubby teaches ie. my friends too...my drs are over there also. Tomorrow soccer season starts for my hubby (back to later nights), and my parents teach 45 mins away (one-way). I'm SO sorry! I'm not trying to sound as desperate as I am, and it is a rare occasion when I do. I just feel like for the very first time I've gotten SO close to the acctual problem (with a pacemaaker getting an MRI has made me MORE than complicated to diagnos), and I'm affraid that it's going to end in "let's try these meds this time to see how they can help" again! I don't know that there are any meds out there that I've not been prescribed! So...
Hydrocephalis...I need a personal experience, someone who's been diagnosed with it, and how they had it treated to give me some advice/direction...I'm a "black and white person", I taught math and science, and this "grey area I will live in bc we can't get a clear reason for my symtoms" (per my neuro - not NS) is not something I've been willing to accept, hence the continued research throughout these 6 years. I've come SO close! Closer than EVER/ANYTHING & I feel like it's going to send me back into that "grey" place.
I am MORE than aware that having chiari surgery is NOT going to fix me. It will hopefuly, through time, make some of my dibilitating symptoms more manageable. I would be over the moon happy with that bc it's at least some improvement. I'm not jumping up and down wanting surgery (brain surgery), but I feel like it's the thing that will help in some way. My scans show a very clear picture of the problem in my skull & how it's affecting the rest of my brain and spinal cord. With all the research I've done it seems that by being able to drain the built up fluid to make more room for what is supposed to be happening would be the ideal solution. It just seems that with the three positive things/steps/findings there's two negatives that come with it.
I will be called sometime this next week to meet with the NS again. He's having to deal with the red tape within the hospital he'll be working in, but that's coming to a close this week. And with all I've heard and tried to find out "they" (the hospital board) are wanting him reinstated bc of the people he has helped. As I/we find out more of what is wrong with me, and what can actually happen to help me I'm trying to keep things in perspective. No "cart before the horse" happening...at least as much as I can try to make myself.
If you've been patient enough and kind enough to listen to all of what I laid out...THANK YOU! There's not many people, well only a few actually, that can listen...actually listen and not just nod their head when I'm thinking out loud. I appreciate you and the time you have taken just now. If you would rather not write back I am more than understanding with that decision. But I will promise to keep any further "thinking out loud" moments to a smaller amount. I am now going to focus more of my research in the direction of the hydrocephalis route as I go forward. Thank you for that direction. And again, thank you so so very much for your time. - Eyrin
hi and welcome to the community. I have also done alot of research an I think the NS might have diagnosed it Chiari 0 due to your brain being displaced, but not to the point of being Chiari. The fluid building up sounds like a enlarged ventricle in the brain? Like hydrocephalis or too much water on the brain. This would cause Chiari like symptoms due to it downwardly displacing the lower brain. Dis the doctor mention anything like hydrocephalis to you? This would make sense to me why this doctor would say Chiari 0. Hope this helps, if you have any other questions, feel free to ask. Stacey
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
