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Someone please help! Chiari Malformation Survivor
Hey all,
My name is Taylor, and I am 18 years old.
A brief history about me:
When I was 11 years old, I was diagnosed with Type 1 Diabetes, and a day away from dying.
2 years later, I had an MRI. I was having constant, very very painful head aches, dizzyness, ringing in my ears, light headed, ect. So when I went to my pediatrician, he suggested an MRI. I got the MRI done on a wednesday, and friday, of that week, my results came back. My pediatican said I had Chiari Malformation type 1, and that I needed to see a Neurosugeon right away. let me back track a little bit... before getting my MRI, my pediatrician though I had a brain tumor, because of the extent of my headaches, and other symptoms, but also because of my behavior, like aggression, depression, ect. Before the head aches and what not, I was healthy, besides the diabetes, an active playing basketball, lacrosse, and softball.
It was like these symptoms hit me out of nowhere!
No one in my family has type 1 diabetes, or Chiari's, and they've been checked.
Back to my story,
So after we got the news from my pediatrician, he refferred me to Cincinnati Chilren's Hospital Medical Center. There I saw the neuosurgeon, who specializes in Chiari's. When he met with me and my family, he showed us my MRI results. He said it was the worst case he has seen in a pre-teen, and that he was surprised I was screaming in agony everyday. He said that my MRI results, are what he sees in older, middle aged adults. He said I had absolutly no other option. but to have decompression brain surgery. My Chiari's was between 15mm, and was starting to push up against my Brain Stem.
So on February 12, 2008, I had decompression brain surgery at 13 years old. My neurosuregon, Dr. Kerri Chron, told my family, that it was worse than he thought going into the surgery. They did an MRI halfway through my surgery, and ended up putting a dura plasty.
I was in the ICU for a while, until eventually I was moved into a regular room.
The reason I am asking, and joined this website, was because I wanted to know if anybody out there has had any problems since having the decompression brain surgery.
I am now 18, and it's been 4 years since my surgery, and I personally feel it was the worst mistake of my life.
I have headaches every single day, an I don't say that lightley.
The pressure in my head is so exxcruciating, i feel like my head is going to explode, or that brain matter is going to start oozing out of my ears.
My vision is horrible, especially when my headaches are so bad. My eyes do this twitch thing, where they move back and forth so fast. And I get double, blurry an spotted vision.
I get lightheaded everyday, and dizzy. Even getting out of bed, or off the couch do I get dizzy and see stars.
The ringing in my ears, are off and on.
The stiffness in my neck is back along with muscle spasms, aches, and pain.
I feel just as, if not , worse than before I had my surgery. I am on no pain medication. My neurosurgeon said that after my surgery, I would be as good as new, and get back to my daily life.
Well, was he FAR from being right..
I am no longer playing any sports. and i had been since I was in 1st grade.
I developed PTSD, and am currently seeing a psychologist and psychiatrist from the traumas of my surgery, diabetes, and other traumas that happened after.
I was also diagnosed with Celiac Disease, 2 thyrioid nodules, that I am currently being tested, and treated for to see if they are cancerous. I was diagnosed with An aberrant right subclavian artery. I was diagnosed with Tachycardia, and put on Beta-blockers, Topral XL- 25 mg to be exact.
I get yearly MRI, that are sent "supposivly" to my neurosurgeon at Children's Hospital.
Every year I get my MRI results back, they say "no trace of chiari's, BUT deffinite changes from my decompression surgery" and no one will tell me exactly what that means. They don't tell me anything at all.
I have not seen any neurologists. Talking to my psychiatrist, she did say that because of my surgery, I am prone to having seizures, but have not been tested for them.
I am at a loss.
I don't know where to go from here or what to do. All I know is I CAN NOT take this pain anymore. It was traumatizing enough at 13 years old, but now 18, it's enough. My memory is completly and utterly bad. My mind is too. I feel like I'm losing it all together.
I talked with my parents about seeing a neurologist as a next step, so we're looking into that.
Has anyone had these problems since having decompression surgery?
Does anyone know of Chiari's coming back? I think my neurosurgeon was full of it.
My name is Taylor, and I am 18 years old.
A brief history about me:
When I was 11 years old, I was diagnosed with Type 1 Diabetes, and a day away from dying.
2 years later, I had an MRI. I was having constant, very very painful head aches, dizzyness, ringing in my ears, light headed, ect. So when I went to my pediatrician, he suggested an MRI. I got the MRI done on a wednesday, and friday, of that week, my results came back. My pediatican said I had Chiari Malformation type 1, and that I needed to see a Neurosugeon right away. let me back track a little bit... before getting my MRI, my pediatrician though I had a brain tumor, because of the extent of my headaches, and other symptoms, but also because of my behavior, like aggression, depression, ect. Before the head aches and what not, I was healthy, besides the diabetes, an active playing basketball, lacrosse, and softball.
It was like these symptoms hit me out of nowhere!
No one in my family has type 1 diabetes, or Chiari's, and they've been checked.
Back to my story,
So after we got the news from my pediatrician, he refferred me to Cincinnati Chilren's Hospital Medical Center. There I saw the neuosurgeon, who specializes in Chiari's. When he met with me and my family, he showed us my MRI results. He said it was the worst case he has seen in a pre-teen, and that he was surprised I was screaming in agony everyday. He said that my MRI results, are what he sees in older, middle aged adults. He said I had absolutly no other option. but to have decompression brain surgery. My Chiari's was between 15mm, and was starting to push up against my Brain Stem.
So on February 12, 2008, I had decompression brain surgery at 13 years old. My neurosuregon, Dr. Kerri Chron, told my family, that it was worse than he thought going into the surgery. They did an MRI halfway through my surgery, and ended up putting a dura plasty.
I was in the ICU for a while, until eventually I was moved into a regular room.
The reason I am asking, and joined this website, was because I wanted to know if anybody out there has had any problems since having the decompression brain surgery.
I am now 18, and it's been 4 years since my surgery, and I personally feel it was the worst mistake of my life.
I have headaches every single day, an I don't say that lightley.
The pressure in my head is so exxcruciating, i feel like my head is going to explode, or that brain matter is going to start oozing out of my ears.
My vision is horrible, especially when my headaches are so bad. My eyes do this twitch thing, where they move back and forth so fast. And I get double, blurry an spotted vision.
I get lightheaded everyday, and dizzy. Even getting out of bed, or off the couch do I get dizzy and see stars.
The ringing in my ears, are off and on.
The stiffness in my neck is back along with muscle spasms, aches, and pain.
I feel just as, if not , worse than before I had my surgery. I am on no pain medication. My neurosurgeon said that after my surgery, I would be as good as new, and get back to my daily life.
Well, was he FAR from being right..
I am no longer playing any sports. and i had been since I was in 1st grade.
I developed PTSD, and am currently seeing a psychologist and psychiatrist from the traumas of my surgery, diabetes, and other traumas that happened after.
I was also diagnosed with Celiac Disease, 2 thyrioid nodules, that I am currently being tested, and treated for to see if they are cancerous. I was diagnosed with An aberrant right subclavian artery. I was diagnosed with Tachycardia, and put on Beta-blockers, Topral XL- 25 mg to be exact.
I get yearly MRI, that are sent "supposivly" to my neurosurgeon at Children's Hospital.
Every year I get my MRI results back, they say "no trace of chiari's, BUT deffinite changes from my decompression surgery" and no one will tell me exactly what that means. They don't tell me anything at all.
I have not seen any neurologists. Talking to my psychiatrist, she did say that because of my surgery, I am prone to having seizures, but have not been tested for them.
I am at a loss.
I don't know where to go from here or what to do. All I know is I CAN NOT take this pain anymore. It was traumatizing enough at 13 years old, but now 18, it's enough. My memory is completly and utterly bad. My mind is too. I feel like I'm losing it all together.
I talked with my parents about seeing a neurologist as a next step, so we're looking into that.
Has anyone had these problems since having decompression surgery?
Does anyone know of Chiari's coming back? I think my neurosurgeon was full of it.
I completely agree with you!! They are egomaniacs and it's unbelievable!!
I am going to request that I get all of my MRI results copied so I have them on file, and then take them into a neurologist once i get one I deffinitley need someone else to review them!
And I'm deffinitley going to ask and look into EDS!
Thank you so much!! I will deffinitley keep you posted, this is the most help I've gotten in 4, almost 5 years!!
Thank you!!! God bless!! -
Taylor :)
I am going to request that I get all of my MRI results copied so I have them on file, and then take them into a neurologist once i get one I deffinitley need someone else to review them!
And I'm deffinitley going to ask and look into EDS!
Thank you so much!! I will deffinitley keep you posted, this is the most help I've gotten in 4, almost 5 years!!
Thank you!!! God bless!! -
Taylor :)
COMMUNITY LEADER
Well I strongly suggest u request copies when u go to sign in for the next one and ask for all previous ones as well....u need someone else to review these.
And do look into EDS....it could be something that is at the root of ur issues....
Keep in mind, Drs r egomaniacs...I really believe that, and if they see an issue on a MRI that may be due in part to their hands, I do not know if they will bring it to ur attention....this is y it may be best to have someone else review the MRI's....JMHO.
yes i ha a post op MRI, i can't remember what the points and measurements were...my doctor didn't do anything with my tonsils he just left them as they were. I get yearly MRI's to see how everything is doing, but I have a feeling that when they check my results, they are just looking at my chiari's and not anything else...I have not had any xrays done yet....
It's funny that you say about the Dr. lifting up my head to see about pressure...I have had my parents do this to me before also..i lay with my head upside down over my bed, and i am amazed with how the pressure subsides, but as soon as i lift my head back up to normal position...the pressure comes right back...someone mentioned to me before about EDS but i never did anything about it...
i just know that there is so much pressure in the back of my head, an all inside my head that it feels like a volcano ready to erupt everywhere, and it puts so much pressure on my eyes that they do this weird movement twitchy thing
my last MRI was October, 2011 so almost a year ago,
i typically get my MRI's around the october time
It's funny that you say about the Dr. lifting up my head to see about pressure...I have had my parents do this to me before also..i lay with my head upside down over my bed, and i am amazed with how the pressure subsides, but as soon as i lift my head back up to normal position...the pressure comes right back...someone mentioned to me before about EDS but i never did anything about it...
i just know that there is so much pressure in the back of my head, an all inside my head that it feels like a volcano ready to erupt everywhere, and it puts so much pressure on my eyes that they do this weird movement twitchy thing
my last MRI was October, 2011 so almost a year ago,
i typically get my MRI's around the october time
COMMUNITY LEADER
Hi,,..if they know Chiari and what ur symptoms r they should....did u have a post op MRI? if so at what point?
Do u know did the Dr cauterize the tonsils? or leave them as they were..the fact u said it was worse inside I wondered about them removing them, as they do that if they r entangled....
The retroflexed odontoid should show on a MRI...the cervio cranial instability is done with a flexion xray,..u stand and bend forward and back during the xray....it can also show the odontoid issues.....
Many times the Dr will lift up on ur head to see if u have a relief of pressure to see if the instability and odontoid r playing a role ....if u have this u usually also have Ehlers-Danlos....many with EDS r prone to reject foreign matter like the synthetic patches...they can fray or just fail and u have a leak....it depends on how large a leak it is how u will feel it.....
When was ur last MRI?
Hi!! omg thank you for responding!! To answer some of your questions: "Do u know what type of patch was used during ur duraplasty?" I had an artificial patch, they didn't harvest any tissue from me or anything like that.
"And that depends on if ur NS removed them, some do that...and some leave them as they were and just make room doing a laminectomy and duraplasty...did u have the laminectomy part of it?Knowing what that NS did would help." I asked my dad and he told me that my NS did not remove the tonsils, he removed the bone to relieve pressure, and used the patch, but did not remove the tonsils.
"Scar tissue can develop and cause issues, and as I said once u have Chiari u will always have it, surgery is a treatment to restore CSF flow and slow progression.
But if they do not look to see if u have cervio cranial instability or a retroflexed odontoid u will redevelop some of the same symptoms...
Some will create too much CSF post op, and their body can not absorb it all and this can create pressure this is ICP....no one knows why some develop it and others do not." My parents were wondering about scar tissue, do you know how that would be detected? from an MRI? and I was not looked at to see if i has cervio cranial instability, or a retroflexed odontoid, or to check for CS fluid. If I went to a neurologist...would they check me for those things?
Thank you so much!! God Bless you!!
(:
"And that depends on if ur NS removed them, some do that...and some leave them as they were and just make room doing a laminectomy and duraplasty...did u have the laminectomy part of it?Knowing what that NS did would help." I asked my dad and he told me that my NS did not remove the tonsils, he removed the bone to relieve pressure, and used the patch, but did not remove the tonsils.
"Scar tissue can develop and cause issues, and as I said once u have Chiari u will always have it, surgery is a treatment to restore CSF flow and slow progression.
But if they do not look to see if u have cervio cranial instability or a retroflexed odontoid u will redevelop some of the same symptoms...
Some will create too much CSF post op, and their body can not absorb it all and this can create pressure this is ICP....no one knows why some develop it and others do not." My parents were wondering about scar tissue, do you know how that would be detected? from an MRI? and I was not looked at to see if i has cervio cranial instability, or a retroflexed odontoid, or to check for CS fluid. If I went to a neurologist...would they check me for those things?
Thank you so much!! God Bless you!!
(:
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is very possible that u have other related conditions to Chiari that were not even looked for...u seem to have other things like the celiac's or IBS issues, u have Hashimoto's thyroiditis with the nodules many of us have that too.....
But there r other conditions u can have along with Chiari or develop post op, and if the NS was not a true Chiari specialist may not have known to look for it or look for it now.
Many can have a syrinx, and not just in the cervical spine, where most Drs look we can have them in the thoracic and lumbar spine too,, as well as having tethered cord disk issues, sleep apnea, ICP, POTS, and ehlers-danlos.
Do u know what type of patch was used during ur duraplasty?
Ur Question can Chiari come back...it can never leave u as it is the malforamtion of the skull, what u really want to know is can the tonsils re-herniate? And that depends on if ur NS removed them, some do that...and some leave them as they were and just make room doing a laminectomy and duraplasty...did u have the laminectomy part of it?Knowing what that NS did would help.
Scar tissue can develop and cause issues, and as I said once u have Chiari u will always have it, surgery is a treatment to restore CSF flow and slow progression.
But if they do not look to see if u have cervio cranial instability or a retroflexed odontoid u will redevelop some of the same symptoms...
Some will create too much CSF post op, and their body can not absorb it all and this can create pressure this is ICP....no one knows why some develop it and others do not.
I know u r right in needing a NL to dx what is going on, but u need one that knows Chiari....some true Chiari specialists have a NL on staff so u get the dx's and they check u for everything....
Even going to a rheumatoid Dr at this point and a neuro optho may be good too....
There r plenty of us that have had surgery...mine was 3 yrs ago....and I still need more surgery as I do have other related issues going on, but my surgery went well and I am glad I had it.
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